What is Shaken Baby Syndrome?

Each year in the United States alone, medical treatment is sought for an estimated 1,400-1,600 babies who have been shaken. Don’t let your child become just another statistic! Tell everyone who cares for your child “Never shake a baby!”

Friday, November 4, 2011

Introducing Lisa Gilbert


Hello. I am Lisa Gilbert, mother to Riley Gilbert, SBS Survivor. Riley was violently shaken on March 27, 2007 at the age of 2 by her day care provider and former family friend. Riley was not expected to survive, and spent many months in the hospital, but she is a true miracle! Riley has been left with multiple disabilities as the result of her attack, but fights daily to improve, with her family by her side. Over the past four years, I have learned how to become a strong advocate for my daughter, while managing Riley’s needs and navigating the legal, medical, therapeutic, insurance, and special education worlds. Aside from my most important roles as a wife to my husband of 12 years, Brad, and mother to Riley and her brother Zachary, I have also worked for the past 11 years as a school counselor for high school students. I hold an Associate’s Degree in Social Work, a Bachelor’s Degree in Sociology with a minor in Social Work, and I am a Certified Counselor with a Master’s of Education in School Counseling from The College of Saint Rose in New York. I began forming relationships through networking on Facebook with other SBS parents, and was contacted by Rachel to blog and serve on the SBS Support Network board in 2009. Since being thrust unexpectedly into life as an SBS mom, my desire and mission is to support others affected by Shaken Baby Syndrome, since many often feel so alone in their journey, and I am thrilled to have the opportunity to do so through the Support Network!

Tuesday, November 1, 2011

Introducing Kelly Link



Hello all, I’m Kelly! I was born and raised right here in Southwest FL. My husband Mark and I have been married for 2 years and together we brought 3 boys into our marriage. We have Cody (9), Jacob (6), and Ryan (8) who is my SBS Survivor.

Ryan was shaken by his biological father in June 2003 when he was 9 weeks old. While Ryan is a high functioning survivor, he still has many medical problems that we have to deal with on a daily basis. They include a Traumatic Brain Injury, ADHD, Allergies, Acid Reflux, Growth Deficiency, Poor Appetite, Multiple sleep disorders, Sensory Integration Disorder, Petit Mal seizures, Anxiety, and Hypotonia. As much as I would like to think that some of these difficulties will go away, I am realistic to know that more than likely they will not, and others may develop down the road. Ryan’s strength and determination are what help get me through my days. He has gone through so many obstacles in his short 8 years of life, and he still continues to do so. However, he always comes out on top, and I have complete admiration for him because of that!

My desire to help others, and to be helped by others who are going through the same difficulties as me is what led me to Rachel with the Shaken Baby Support Network. Having someone who completely understands what you are going through is more beneficial than I could ever describe. The friends that I have made through this journey are more like family, than like friends. They are my shoulder lean on when times get tough and I am the listening ear whenever they may need it. SBS has become my life and I am willing to devote all of my time and attention to awareness and education so no one has to go through what we do!

Monday, October 31, 2011

Introducing Angela Cook






Hey there! My name is Angela, cousin to the most fabulous little cousin, Michael. I have 3 amazing children with the love of my life, Jason. Together we have attended numerous candlelight vigils. I am also a full time student with the ambition to work in the health care field, the exact profession is not fully determined yet. I am happily awaiting to see what our future holds in the coming years. :)

I was never blessed to have met my cousin Michael in person, he was gone before my uncle (Jerry) married his mother (Tammi). Tammi and Jerry had one of the most beautiful weddings I had gone to. The floral arrangement was spectacular, there was a bouquet of roses and in the center was a sunflower. The roses signified all the loved ones we had lost, he sunflower was the symbolic gesture of remembering that we were missing someone very dear, Michael.

From that time on I would learn about Michael through his older sister, Nicole. Nicole and I would stay up late at the grandparents, and somehow us two would start talking about Michael, I knew she missed him each and every day that passed. The day must have played over and over in her head. Michael and Nicole's sister, Elizabeth was hospitalized with pneumonia, so Tammi had planned on a friend, whom also was a nurse, to watch over her other children while she stayed bedside with Elizabeth. The day Elizabeth was set to be discharged from the hospital is the day everyone's life changed. A nurse had found my Aunt Tammi, and said she was needed downstairs in the ER, puzzled as to why she went downstairs to hear and see the horror of what happened to her 6 month old baby. She would later learn that Michael suffered from Shaken Baby Syndrome and was also thought he was slammed up against a wall or floor, his chances of survival was only 1%.

Baby Michael defied all odds and survived. He was left with severe handicaps, however he thrived on the love that surrounded him. At the tender age of 5, Michael's body left this earth. As a family we are positive that he remains around us, we all feel his love on a daily basis.

It is because of Michael that I hopped onto Myspace to raise awareness for all children of child abuse. It was then that I ran into the most horrific thing ever. There were many, many cases of Shaken Baby Syndrome. It was around 2007 that I had the pleasure to talk to Rachel, the mother of angel Madilyne Wentz. Rachel wanted to do something for all the victims of Shaken Baby Syndrome. Our first small step in raising awareness together was doing a small video montage of the many victims and survivors of SBS. From there the rest is history as our main goal is to provide comfort to the families, by us, the family. Sometimes it's best to be able to talk with someone who has walked in similar shoes.

Sunday, October 30, 2011

Introducing MamaSue


My name is Sue Sumner, mother to Dustin and Rachel Sumner, grandmother to Madilyne, Brody and Blake.

I was born in Emporia, KS and lived there most of my life. I come from a good sized extended family, but I was the only child growing up. I had a wonderful Mother and Father, who have since passed away.

After High School, I went to Cosmetology School. Throughout the years I have worn many hats, though. I have worked with interior decorators, managed fast food and family style restaurants, been a receptionist both to a moving company and a copier company. I have poured, made and sold ceramics, was a hairdresser and nail artist, owned a motel and a restaurant for about 10 years, and was a dispatcher for communications company. I worked for a non-profit organization as a customer service rep and I now work, again, as a dispatcher for a company which sells and services printer/copiers. In my spare time I paint pictures and walk the bridges here in Little Rock. I have lived in Kansas, Missouri, Florida and most recently, Arkansas.

I was married at 19 and we were together for 34 years. That is when my granddaughter was murdered, due to Shaken Baby Syndrome, and family life was never the same. I lost my beautiful granddaughter to someone’s negligence and rage. Something 100% preventable.

Having gone through all the “stuff” related to Shaken Baby Syndrome has taught me to appreciated my family and be thankful for what God brings into my life, for one never knows what will happen in the next moment. Thanksgiving holds a whole new meaning each year as I recall all that I have and am thankful for.

Tuesday, October 25, 2011

Introducing MamaKim


Hello! Mama Kim here. I have been married to Denny for almost 26 yrs. We have 3 grown children Steffany, (twins) Denny Jr., and Dani. We have 1 grandson Dominic, and a new grandchild due in mid March!!
I was a cook for 20 yrs and now I am Assistant Office Manager of the Bureau of Motor Vehicles in Bowling Green, Ohio.
We became more familiar with SBS in March 2007 when our then 3 month old grandson Dominic was violently shaken by his biological father. He had a subdural hematoma, both retinas were hemorrhaged and he had 5 broken ribs in his back. In 2008 I was doing research on SBS because I wanted to understand more, when on MySpace I came across Rachel, her story and the story of little Kaleb. From there the rest is history.

Coming soon...!

Hello to all of our SBS friends and families!!

As many of you know the Network is currently changing a few things around, and revamping some others. One of the things that we thought was important during this process was giving you all the opportunity to know exactly who we are, and how we came to the network. Coming soon you will see a posting containing a biography and a picture of each of our board members. We hope you enjoy this!

Tuesday, October 4, 2011

Here we are...

I can truly not believe it has been the 7 shortest months of my life since I've truly last posted anything on this blog. I've been away for a number of reasons, with the main one being my mental health.

It has been a long long time since I've opened up to all of you about "the real me" and my struggles. My struggles however, have been what has brought me to you and you to me. Each one of you. Through posting, when we go back clear to MySpace where this "group" truly formed, I began just blogging on a daily basis, about what was happening, what was going on, and the struggles. One by one I came into contact with you, and for that I am forever grateful. With that said, I have some extremely personal things to talk to you about. I have been known to say too much, and at times not enough, so I wanted to take a moment, and open up again, like I haven't in over 4 years. The best part about falling, is the getting up.

I would first share with you that I have moved. Not to another state, or even another town, but to what I can officially call home. My fiancé (by the way I am engaged!) and I moved into our first official home together in June 2011. I can tell you when I walk in from work, errands, or even letting the dogs out (yes we have 2) that I've walked into what I can finally call home. That in itself has been extremely emotional because I have not had that feeling since Madilyne. I've felt an overwhelming sense of displacement ever since.

I moved to Arkansas in July 2009, to be hired on by an amazing company, and within my time spent working I would find the man I prayed so long and hard for. In February 2011, he proposed and I indeed obliged. He is everything I prayed for and more. We all have hopes and dreams when it comes to life, and through the darkness that has filled my life in the past 6 years, it was extremely hard for me personally to hold onto hope, for fear it being false. I turned to prayer, because whether answered or not, the unanswered turned out to be the bigger blessings in my life.

The proposal was perfect, just as any girl could ever hope it to be. It was beyond any feeling, emotion, or imagination. It didn't include extravagant flowers, thousands of people, or millions of dollars. It included so much more. His promise to me, his love for me, and his life he wanted to spend the rest of with me. That was beyond any of the previous listed. I was excited. He asked I not announce it (and for those who know me know I CAN'T keep a secret!!!) until we had my mom and his parents over for dinner, and we were both able to talk to our families. It was out of that I knew, this is how it is SUPPOSED to be. Intimate, private, and all about the love we share.

Then all of the sudden it came to me. I am going to be planning a wedding. My wedding. Our wedding. I immediately began garage sailing like an insane woman, getting all the tools and supplies I needed, and began clipping articles, getting the image set just right on paper and in my mind, to make it as close to perfect as possible. It wasn't even 2 years ago I was a girl, prepared to devote my life to the Network, and begin stock piling cat food. I never in my wildest dreams thought I could ever unleash my heart ever again, but deep down I always held true to my prayers, all in due time, he would come. He did.

It was a good way into the planning process that I began going through these moments, and those moments turned into days, and days of course turned into weeks, when I began to stay in bed. I didn't want to talk to anyone, I did not want to go anywhere, I just wanted to lay in bed and pretend that nothing was going on outside of our house in the world. Was I depressed? But if I am depressed, why am I depressed? I started seeing my Therapist at least twice a week to begin, a Psychiatrist once a week, and my primary Dr. once a week. They would try medicines, try other medicines, some making my physically ill, others making me emotionless, and then there were the ones that making me sick beyond holding my head up. That continued for at least 2 months.

Finally, I was at my therapists office talking to him one day, and the wagon I have been in hit a brick wall head on and the tears began to fall down my face. It was then I realized, all of the heartache I felt from my divorce over 8 years ago, had been suppressed this entire time. From the moment my divorce was finalized to the date Madilyne was killed was almost exactly 4 months to the day. The following I watched my parents marriage of 35 years dissolve itself, and I moved too many toes and fingers to count the times, that as I spent so much time working through what happened with Madilyne, and deciphering between all the guilt I carried in my heart for the day when my heart told me to pick her up while working, and not even 30 minutes later I got "the call". I never knew how much my heart was tarnished from all of this combined together.

This is supposed to be the happiest time in my life. This is supposed to be the time when the parties are non stop, I'm working out to look my best, planning like crazy, and spending time with all my lady friends to figure out the details. I have done not one. I have spent the past 4 months holding him close, very close, because I love him.

This blind sided me. I have failed some, but most of all I have grown even more emotionally because of this. I am happy, once I said all of this out loud, I was able to finally acknowledge what was hurting my heart, I was able to deal with the dreams of flashbacks I was having and to decipher whether it was real or fiction, and my dreams have again became dreams and not dreaded nightmares.

These past 4 months have been a growing period for me, I can not begin to put into words without sounding like I am rambling. Which brings me to this blog. This blog began in 2009, but this journey with so many of you began clear back in 2006 on MySpace. I began to open my wounds, write blogs, explain how I dealt with a situation, what enraged me, and what made me content. It was that way that I have been able to connect with all of you, and I am sorry if there has been a block between that. I have said so many times that I wish when some people get to a certain point in their lives, they could just remember what it felt like at the point I was in, or they could just remember what it is like to have a day when you feel the entire world is against you, and that is why I am here. I am here because this my friends, whether you have just found this blog or been on this journey with me since the days of MySpace, this is where we found our common ground and our feelings.

I will never attempt to relate to a mother of a Survivor, and at times it is hard to relate to a mother of a victim. I can guarantee one thing, Madilyne's Legacy that brought so many of us together will always continue, and this Network will be in place, just maybe not as it has been.

There has been great confusion within my heart on how to talk to you all of you about this, because I know how much it means to ALL OF YOU, but also to ME. With the help of all of you, I was able to lead the way for this Support Network, to form a group, for all families to join together regardless of their circumstances to obtain the support they need. The Support Network has done just that. We have grown beyond any number to ever flash in my mind, there is demand after demand for families across the Globe for opportunities that are quickly becoming endless, and it is absolutely amazing how beautiful all of this has become. However, it is time for regrouping, so the Network and the support, and abilities for us continue to grow as much as it can and be healthy.

In order for this to happen I am going to have to tell you something that is so bittersweet for me. Madilyne brought you all to me. If it wasn't for her I would not know not even one of you. In 6 years, she has brought over 25,000+ people into my life, for comfort and for support, and because of that, there is something I need to do for her, and most importantly I need to do for me and my soon to be husband. Our wedding is March 10, 2012, and with that said, I must announce that the vigil this coming year (April 2012) will be broadcast live via UStream. It is such an important event for the healing families have obtained from this event. It is not your 5 star event, with flashy hotels, suits and ties, or your Sunday Best. It is a family reunion. One weekend each year when we gather together as the growing family we are, to spend an awesome time together. This year, we are going to light the sky with our candles, and all of our speakers will be present, and we will have a lot of announcements this year as well. This year, every single one of you will be able to attend the vigil, even if there will not be a gathering, we will all be together, Live.

This has been the headrest decision for me to make. All of the Board Members with the Support Network have worked their butts off and it will continue. We do not stop, ever. We just have to be flexible, due to the responsibilities entailed within planning such a special event. Truly, we have all been affected by SBS and are here together, and each have our times, when we need time to heal. This is mine. It is very important for me to take this time, with my soon to be husband, so I can continue on my journey in life, as a healthy, happy woman, mother, daughter, sister, aunt, and now wife. This is not temporary, this is for the rest of my life. I do not ever want any of you to feel let down. We are going to empower, and do what has never been done before. The world's largest Social Media Candlelight Vigil for Shaken Baby Syndrome. I hope you will be there, and I hope you tune in. I will have information the latter part of November for you, with time and links and such because this will help lead us to the biggest Vigil yet, the SBS Vigil of 2013!

From the bottom of my heart, I love you. All of you. One would think it should or shouldn't be a "big deal", to me it is. Because without all of you my family, and my fiancé, I can not continue.

All my love,
Rachel
rachel@sbssupportnetwork.com

Sunday, July 17, 2011

Last update! Winner To be announced at 12:15am CST

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 11:53pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 199 VOTES
Riley Gilbert - 277 VOTES
Lily Yeager - 107 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 95 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES


FIRST PLACE - Riley Gilbert
SECOND PLACE - Dominic DeWitt
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com




11PM Update - Only 1 more update before winners are announced!

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 11:03pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 199 VOTES
Riley Gilbert - 247 VOTES
Lily Yeager - 107 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 93 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES


FIRST PLACE - Riley Gilbert
SECOND PLACE - Dominic DeWitt
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

10pm Contest Update - Next Update to come at 11:15pm! CST

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 10:03pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 199 VOTES
Riley Gilbert - 211 VOTES
Lily Yeager - 97 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 93 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES


FIRST PLACE - Riley Gilbert
SECOND PLACE - Dominic DeWitt
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

8PM CST Contest UPDATE! The RACE is ON! New top runner!!

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 8:20pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 199 VOTES
Riley Gilbert - 163 VOTES
Lily Yeager - 97 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 73 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES


FIRST PLACE - Dominic DeWitt
SECOND PLACE - Riley Gilbert
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

6pm CST Update! Only 5 hours & 59 mins more to vote!!!

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 2:20pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 115 VOTES
Riley Gilbert - 127 VOTES
Lily Yeager - 97 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 52 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES


FIRST PLACE - Riley Gilbert
SECOND PLACE - Dominic DeWitt
THIRD PLACE - Lily Yeager

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

2:00PM CST Contest Update! BIG CHANGES!

SBS Race Track BILLBOARD SIGN CONTEST UPDATE
Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 17th, 2011 2:20pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 115 VOTES
Riley Gilbert - 102 VOTES
Lily Yeager - 97 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 32 VOTES
Colby Thompson - 12 VOTES
Sarah Jane Donohue - 52 VOTES
Xavier Delgado - 50 VOTES
Juliana "Jules" Thaxton - 67 VOTES


FIRST PLACE - Dominic DeWitt
SECOND PLACE - Riley Gilbert
THIRD PLACE - Lily Yeagar

KEEP VOTING! Contest ends TONIGHT!!!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

Saturday, July 16, 2011

SBS Race Track BILLBOARD SIGN CONTEST UPDATE

Billboard Sign Contest Update!!!
As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 17th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 16th, 2011 8:20pm CST

Evalee Johnsen - 33 VOTES
Kaleb Schwade - 39 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 95 VOTES
Riley Gilbert - 82 VOTES
Lilly Yeager - 92 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 32 VOTES
Colby Thompson - 12 VOTES


FIRST PLACE - Dominic DeWitt
SECOND PLACE - Lilly Yeager
THIRD PLACE - Riley Gilbert

KEEP VOTING!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

Thursday, July 14, 2011

Urgent! We need 2 minutes of your time! From Patrick Donohue

As you know, we have been working for several years to create and now implement the National Pediatric Acquired Brain Injury Plan (PABI Plan) which develops a seamless, standardized, evidence-based system of care for the millions of American families who have a child/young adult suffering from the #1 leading cause of death and disability for our youth: brain injury!

We are on the cusp of making history and we need just a little bit of help from you and your friends; please take just TWO minutes (120 seconds) to help change the world for millions of our families who have a child/young adult with a brain injury.

Later this week Congressman Leonard Lance will be introducing the National Pediatric Acquired Brain Injury Plan Act (PABI Plan Act) which will create a $2.9 Billion, seven-year initiative to implement the PABI Plan (this legislation will NOT create any new federal agency, will NOT add any new federal jobs and will NOT add a penny to the federal budget). Simply put, the PABI Plan will make sure the millions of our American families will no longer need to reinvent the wheel to care for their child with a brain injury!

Please follow these three easy steps which will take no longer that 120 seconds:
1. Find out who your Member of Congress is: by going to this website and entering in your Zip Code you can easily find out who represents you in Congress
click here: http://www.house.gov/htbin/findrep?ZIP
2. Send us an email to Ted@TheBrainProject.org with the name of your Member of Congress
3. We will email you the name and phone number of the appropriate staff person to call and leave a 30-second message encouraging your Member of Congress to be a co-sponsor of the PABI Plan Act

It is that SIMPLE and that EASY!! Members of Congress like to hear from their constituents and your message will mean a lot! We are trying to get 100 co-sponsors by Friday (50 Republicans and 50 Democrats)!

And finally, if you can ask any family or friends to take TWO minutes from their day to do the same thing by simply forwarding this message to them!

If you would like to learn more about the PABI Plan and our efforts, please read my letter to Sarah Jane when she turn five: www.TheBrainProject.org/lettertosarahjane.php and if you would like to read the three-page PABI Plan Act please visit www.TheBrainProject.org/PABIPlanAct.php

I cannot thank you enough in advance for taking TWO minutes out of your day for Sarah Jane and the millions of American children/young adults just like her across the country!

All the best,
Patrick

Patrick B. Donohue, Esq.
Founder, The Sarah Jane Brain Foundation
339 Fifth Avenue - Suite 405
New York, NY 10016
(212) 576-1180
www.TheBrainProject.org




Friday, July 8, 2011

Billboard Sign Contest Update!!!

As you know the BILLBOARD SIGN Contest began June 15, 2011 and is set to end JULY 15th 2011 at 11:59PM CST! Anyone can vote and ANY child can be entered into the contest! All it takes is 1 vote! Pending the fund raised of $300, the WINNER will be on the billboard sign that is 4FT by 8FT at the Toledo Ohio Speedway in Toledo Ohio on Shaken Baby Syndrome RACE NIGHT August 5th!!!! The winner of this contest will be on a billboard sign in the BEST viewable location on the track and will be recognized with the 1st, 2nd, and 3rd place winners (SBS Heros) that won the RACE CAR contest in October 2010!! (Xavier, Maddie, and Jules) :)

Each $1.00 equals 1 vote!! You can get your vote in today by going to: http://www.shakenbabysupport.com and clicking on the "MERCHANDISE" tab on the website, and purchasing your tickets there! Each vote counts!!

Please remember to pass along this information to all your friends and family!!! The ONLY requirement for this contest is the guardians permission!

GOOD LUCK!! Keep the votes coming!!!! :)

As of July 8th, 2011 8:20pm CST

Evalee Johnsen - 23 VOTES
Kaleb Schwade - 19 VOTES
Evelynn Biondo - 17 VOTES
Dominic DeWitt - 35 VOTES
Riley Gilbert - 72 VOTES
Lilly Yeager - 27 VOTES
Trevor Paour - 17 VOTES
Madilyne Wentz - 20 VOTES
Colby Thompson - 12 VOTES


FIRST PLACE - RILEY GILBERT
SECOND PLACE - DOMINIC DEWITT
THIRD PLACE - LILLY YEAGER

KEEP VOTING!
As always if any concerns arise, please contact Rachel ASAP at rachel@sbssupportnetwork.com

Friday, April 22, 2011

2011 SBS Vigil LIVESTREAM Videos! Watch HERE!!!

What an awesome year for the families and the Network! A more indepth update and pictures are coming, but I know many of you stated you were not able to find/view the live stream or videos following the event so I wanted to take a moment and post them here for your viewing! Enjoy, and please let me know if there are any issues!

All my best,
Rachel
rachel@sbssupportnetwork.com
http://www.shakenbabysupport.com
FACEBOOK
TWITTER



On our way to pick up the families at the Tampa Airport!


A portion of the families have arrived and are EXCITED!


The VIGIL Begins!









The Morelocks celebrated their vow renewal with a surprise ceremony from their son DJ and his good friend Hunter <3

A few families stayed, to take Dominic, a SBS Survivor, to Disney World's Magic Kingdom, and Rachel, released a balloon that went straight to Heaven for Madilyne <3

Friday, April 8, 2011

Jackson's Story

Another little who is a survivor of Shaken Baby Syndrome, a hero in so many ways.



Jackson Alexander Greer was born September 21st, 2009. He was a beautiful, healthy 6lbs. 15oz. boy. Jackson was always a great baby, a mama's boy from day 1. We did have troubles finding a formula that would work with his digestive system. Jackson only cried during diaper change, wanting to be held, or if he had a stomach ache. All those can be easily taken care of, patience is the key to having children. I went back to work when Jackson was 6 weeks old. One of my friends was opening her own daycare and wanted to watch my boys to get started. She had 2 kids of her own. She never once told me she couldn't handle Jackson. She always said he was a good baby along with his brother James. On December 8, 2009 Brandi had sent me a few text messages at work saying Jackson had fallen off the bed. She said she was changing him, reached over to grab a wipe, James pulled on the blanket, and Jackson rolled off the bed. The thing I didn't understand was why didn't she see that happening? Jackson supposedly landed on his stomach and cried for about 30 minutes then he was fine. I'm one of those paranoid moms so I left work and rushed Jackson to the pediatrician. Dr. Porter of Idaho Falls Pediatrics was the one checking Jackson over. To tell you the truth he made me feel like an idiot for bringing him in there. I told him the story and he looked at me with this dumb founded face, and asked why I brought him in? HE'S 3 MONTHS OLD AND FELL OFF A BED! I asked him to please check him out, so he felt his neck and his ribs and said he was fine. He then sent us on our way. Not once did it cross my mind that someone I trusted would shake my defenseless baby. That's something you only hear on the news. After that incident Jackson started to get more and fussier. He also wasn't gaining weight. On December 16th Jackson started throwing up his whole bottle; none of it would stay down. So the next day I took him right in and once again Dr. Porter looked at him. His original doctor was Smith who was always busy. He told me he had acid reflex, which that was wrong I later found out. He actually had a concussion. He prescribed some medicine for Jackson and told me to give the medicine a couple of days. The medicine kind of seemed like it was working, but he was still fussy, throwing up somewhat, and he had diarrhea. When I called to ask about it the nurse told me that was normal. The last day Brandi watched him was December 23rd. I was getting off at 8 pm and would be leaving for California. We went to go see Jason's family, the father of my kids. When i got to her house she already had Jackson in his car seat asleep. I left to go meet Jason at his house so we could start driving. Before we got to Twin Falls I asked Jason to please pull over I needed to check on Jackson he wasn't fussing at all. I pulled him out of his car seat and he had spit up with what looked like his brown medicine on him. So i changed him and talked to him, but he was acting strange. So we got back in the car and started driving again. I called my mother telling her about it, but she said maybe he was car sick? Before we got to Elko Nevada I had pulled Jackson out of his car seat and just held him. He wasn't eating or fussing. We got a hotel room, called Brandi to see if she noticed anything different, and also called the on call nurse. The on call nurse told me to try giving him 2 ounces of water, and Brandi didn't answer. I slept off and on through the night with Jackson laying right next to me and right on my chest. About 4 am Christmas Eve he started twitching on his right side. I was really freaked out so called the on call nurse once again, and she told me she would have to look at him to know what the twitching was. Brandi finally called me in the morning, but she said she noticed nothing and started to cry about her marital problems. I told her I would talk to her later, and kept calling the pediatrician. I never could get a hold of anyone, so I took a quick shower, and that's when they called. So I called them back but I got no one once again. I told Jason I just wanted to get him to a good hospital. So we started on our way again. From Elko to the top of Donner Pass I held Jackson the whole time. I was so worried I didn't want to put him down. He wasn't eating, babbling, and his right side would twitch. During the time I kept in touch with my mother, Jason's mother, my sister, and my best friend. I did get Jackson to drink 3 ounces of pedialyte and sprite mixed together. We had reached Elk Grove, California, where Jason's grandmother lived. We dropped off James and Jason's older sister. We then went to the emergency room. Jackson was so white and frail it was the worst I have seen my baby. When I got him in the E.R. they took his weight and I explained everything. He weighed 8 lbs, defiantly not normal for a 3 1/2 month old. We went into another room, explained everything 2 more times, and that's when Jackson had another twitching moment. The twitching was a seizure. He had another seizure and died right there in front of me. Everything happened so fast after that, so many doctors and nurses were running around. We went to another room where they started to work on Jackson. I couldn't stay since they were putting in a ventilator, so they put Jason and I in a little tiny room away from my baby. Wrong thing to do for a mama who loves her children. I started calling my little brother begging him to go wake up our parents to tell them Jackson stopped breathing. I couldn't handle it anymore so I went by Jackson's room. A nurse stood there with me and talked to try to calm me down. I finally got to go see my baby, but I had to leave so they could go to a cat scan. They then transferred him to U.C. Davis Hospital in Sacramento.

I never left his side. He had 4 doctors when we got to ICU, but not one thought he was going to make it. We got there at midnight Christmas day. I cried and cried and just held my little man's hand. I slept on a bed next to him. Later that day I left to go shower and see James. I ate dinner but wanted to leave the whole time. I watched James open some Christmas presents, and after that I left to go back. I took Jackson his stocking and glow worm I had gotten him for Christmas. I never wanted to leave him. I was a complete mess I couldn't finish my sentences and just cried.



On the 25th I did ask the doctor if it was shaken baby syndrome. He explained to me that his little brain was so bruised and so much blood was in his little head that his soft spot was no longer soft. it was hard as a rock and bulging out. I called my family right away to let them know. My sister flew out to put my head back on straight and to be there with me. Thank God I had her at that time; I would have never got everything straight. Words cannot express how thankful I am to her. On the 26th I had to make a decision to either put a tube in Jackson's head to drain the blood or not. Of course I chose the tube. So much blood came out of his little head. I couldn't hold him for a whole week because of the ventilator. He was sedated during that time, but I still told him all the time he was so strong and could make it through this. I would sing to him, tell him stories, talk about the future, and tell him how much I loved him. So many tests were done on him during that time, but we had to do it. January 2nd was the first day I got to hold him again; they had taken out the ventilator. That was the most wonderful feeling in the world I didn't want to put him down, but of course had to. We finally got to come home January 15th which was relief. A week after that I got Jackson to hold his own head up and he started moving his right side. A mother’s love does a lot of healing on its own. Our stay in the hospital Jackson got a great formula that helped him, Similac Alimentum, and he had to relearn how to eat. He couldn't move his right side and no longer could hold his head up. A respiratory and occupational therapist would come to see Jackson everyday. The occupational was to work on his eating with a bottle, no longer a feeding tube. We had many meetings with doctors to check on Jackson's progress and to make sure we understood everything. We learned that Jackson was shook the first time on the 8th of December that's when he got a fractured shoulder. The throwing up was a concussion, not acid reflex, and the last time he was shook was the last day she watched him, the 23rd. His little body couldn't take it anymore so he slowly started to die on me. She shook him so hard his brain was bruised from hitting his skull and his brain stem had been damaged. He does have permanent brain and stem damage to this day, but you would really never know. The doctors weren't sure if he would ever crawl, walk, or be able to talk, but he has proved he is a miracle. He is so strong and I'm so proud of him. He is the sweetest little man and has a gorgeous smile. Jackson goes to therapy twice a week for 2 hours each day. He has occupational and speech therapy, which has helped tremendously. He did have a balance issue, but that was due to the brain stem damage. His right eye now goes lazy so he wears a patch one hour a day along with trying to get him to wear glasses. I've seen such an improvement on him, that I thank God every day to letting me keep my miracle baby. He is currently 7 months behind on speech, but he will catch right up. He is so smart. For me it has been a challenge in life, but I stay strong for my kids. I do have nightmares of Brandi coming to my house and shaking Jackson again. I get paranoid a lot and only trust few to watch him or any of my kids. I do cry to this day, but its only because just the thought that I almost lost my baby just kills me. I just try not to dwell on the past, look towards a nice healthy future with my children, and give my babies hugs and kisses every day. I've also talked to other mothers of children who have either been survivors or victims of shaken baby syndrome. Everyone needs to know more and more about SBS than what they do. People just need to realize babies cry because that's their way of talking, and to just walk away if you can’t handle the crying anymore. Children are the most important to our future. So please pass the knowledge around to not shake a baby. It is murder and should have more punishment than what it does.

Wednesday, April 6, 2011

Watch LIVE April 14 - April 16 2011

As many of you know we have been frantically preparing for the 5th Annual Shaken Baby Syndrome Candlelight Vigil! I will be posting many pictures on twitter and facebook(for the support network) and on my personal facebook, but I wanted to post here the live stream where you can view! You can also catch up on anything you may have missed by clicking HERE. Will be in Florida for 13 days, leaving on Monday and will be posting on and off through the entire journey to the vigil. THEN on Friday April 15th at 7:00p.m. EST you can come here, our website, or by clicking the link below to watch LIVE from the SBS Vigil!

Please check out http://www.ustream.tv/channel/shaken-baby-syndrome-candlelight-vigil-2011 to view all the videos, directly below the live stream on that page to see videos and clips of all the happenings from April 14-April16! We will be picking up 13 families at the airport all day Thursday and will begin broadcasting on and off from 12pm-3pm EST!

Thank you for ALL of your support! Look forward to sharing with you many memories ahead!
Love,
Rachel





Live Videos by Ustream


Saturday, March 26, 2011

Riley, 4 years after being shaken


Little Miss Riley, a beautiful strong little girl with a smile that will light an entire room. She continues daily to battle the effects of Shaken Baby Syndrome. Our thoughts and prayers for continued strength in these trying times go to not only Riley, but her parents as well. Now on to her beautiful, amazing story of hope, faith and love.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

My daughter was a healthy, happy, energetic, beautiful, social, and bright child. She was just over 2- years- old, and was hitting all of her milestones early. There were so many things Riley enjoyed doing- dancing, swimming, coloring, playing with her stickers and play doh (i.e. her “colors”) with daddy. Riley loved her “guys” (little figurines she carried everywhere with her) and her Disney shows and movies. Riley loved to look at books, and could tell me what every picture was. She loved playing with other kids. She had even learned counting in Spanish and some sign language. She loved being outdoors, going for walks, and going to the park to play on the swings and slides. Riley was honestly the model child, I couldn’t have asked for a more perfect little girl.

On March 27, 2007 our lives were changed forever at the hands of our day care provider, and family friend. The day started out as any other- we awoke in the morning, got ourselves ready, said our goodbyes, exchanged our kisses and “I love you’s” with Riley’s dad, and left on our way to the babysitter’s home. Before I left that day, I said goodbye and I love you to my little angel and gave her a kiss, as I always did. She was all smiles, in her new purple Gap velour sweatsuit holding on to her yellow sippee cup filled with milk, playing with one of her friends- I’ll never forget that vision, because I will never see my little girl in the same way again.

At about 12:20 PM, I received a phone call from our babysitter stating that something was wrong with my daughter, that she had been put down for a nap, and she wouldn’t wake up. My stomach dropped. I asked if she had called 9-1-1- she had not. I instructed her to do so and I immediately gathered my things and ran out of the building.

Riley was air lifted to Albany Medical Center that afternoon. It was in the ER that we learned Riley had suffered a traumatic brain injury- we were in shock. She was fine when we dropped her off. They informed us that she needed to be rushed into surgery to save her life, and we immediately gave permission to do so without another thought, anything to save our little girl.



The first of many miracles to come over the next year, Riley had made it through surgery- but she was not expected to survive much longer- her chances were slim. If she did survive, there was no way of knowing how she would be, but most likely, she would never be the same child again. The neurosurgeon explained the severity of her head injury and prepared us for the worst- we hoped for the best. We just wanted her to survive. Riley would be fighting for her life over the next few days.

We were living every parent’s worst nightmare. Riley was hooked up to a respirator, her little chest jerking up and down in an unnatural way. She had tubes coming out of her nose, mouth, chest and arms. She had bandages around her head where there were endless staples from her surgery- they had removed her left bone plate to allow her brain to swell, and they had shaved half of her hair off. There were monitors next to her bed that showed her heart rate, blood pressure, respiratory rates, and the amount of pressure in her head- the numbers appeared to be constantly changing. There were two poles behind her bed filled with medication delivery devices, at least 5 on each. She had two nurses assigned just to her, sitting right outside her door at all times, monitoring her care. Her little face was so swollen, her eyes were bruised and swelled shut and there was dried blood on her face. I couldn’t do anything other than stand there helplessly, hold her hand, pray and cry. We didn’t speak because the doctors said that she would try to hear us and it would strain her too much to try and focus on anything- they wanted her to rest. The room was dark and quiet except for the beeping of all those machines and the noise of the respirator.

During the next 3 months in the PICU, Riley defied the odds and was so strong, she endured more then any child should have to. Her heart stopped beating and she coded twice while I stood by and watched helplessly as doctors worked to revive my daughter- pumping her chest, injecting her with drugs, shocking her little heart. The second time in May of 2007, they had to put her back on the ventilator to help her breathe – at that time they also found a blood clot and spent over a week trying different drugs to regulate her heart rate and blood pressure. She faced surgeries to clean an infection from her brain, to replace her skull plate, to clean up her incision from the initial operation, to have a ventricle drain put in, to have a permanent shunt placed, to insert a feeding tube in her stomach (she had this surgery twice and went to the ER three times to have it corrected), she faced multiple infections in her blood and in her cranial fluid and spent over a month on antibiotics, she spiked high fevers, suffered morphine withdrawal (twice), had tremors so severe they prevented her from sleeping, she was also placed on methadone to help with drug withdrawal. I’ve lost count of the number of CT Scans, EEG’s, MRI’s and other medical procedures and tests Riley has had to suffer through. I stayed at the hospital with Riley the entire time, I couldn’t bring myself to leave her side, I was terrified that I was going to lose my daughter.

After leaving the PICU in June of 2007, Riley was finally transferred to a rehabilitation hospital. The first two weeks Riley didn’t do much other than cry both in and out of therapy. There was nothing we could do to soothe her. She was able to get some physical, occupational, speech and recreational therapy but it was very stressful and exhausting for everyone. She couldn’t eat any solid foods, and wouldn’t open her mouth for months. Riley was unable to hold her head up after so many months lying in bed and had no control of her neck or torso. She would drool all the time because she couldn’t swallow properly. She had a condition known as “drop foot” from lying down. Her hands also needed braces and were often stuck in a fist-like position. She would often “tone” which is when she would hold her whole body rigid and then cry. It was difficult to break her of this, and she still does it occasionally, even on medication to control it.

On top of all of Riley’s medical issues, my husband and I were considered suspects of this brutal crime, and were pulled from Riley’s bedside on countless occasions to be questioned and to make statements to police officers, social workers, attorneys, and Child Protective Service workers. We were forced to leave our daughter and endure reliving the most horrible experience of our lives over and over again, even on the stand at Grand Jury, Family Court, and finally, over a year later, at the Criminal Trial. Everything in our lives was put under a microscope- our parenting skills and style, our decisions, our family and friends, our pets, our love and care for our daughter. My husband and I eventually had to come to terms with the realization that our friend had in fact hurt our daughter. We’ve had to live with the guilt of leaving our daughter with someone we thought we trusted unconditionally, someone we loved, and someone we considered a friend. We went to trial in April 2008. Riley’s attacker was found guilty and sentenced to 18 years in state prison for the assault.

In over two years Riley hasn’t walked, fed herself, or sat up without assistance. She is finally able to say “hi” and “on”. She is legally blind and will face that challenge for the rest of her life. She must take seizure medication and muscle relaxers on a daily basis. She still cannot fully hold her head up for long periods of time, and she still needs to be held or be in a special chair or standing frame that holds her up. Riley is steadily making progress with her eating, and luckily the feeding tube is gone. We have purchased countless sets of braces for Riley’s legs, two special chairs for her to sit in, a special car seat, hand splints, endless medications, glasses and vision therapy. Riley has recently started potty training. She attends an integrated preschool program where she gets physical, occupational, speech, assistive technology and vision therapy. She has a one-on-one aide to assist her in every activity at pre-school. She still attends therapy at the hospital once per week to work on her walking, and is also enrolled in hippotherapy (horseback riding) and swim class. She has faced numerous dental appointments to correct oral issues sustained from months of breathing tubes and her tonic bite, by not allowing us to properly care for her teeth. Riley will have Botox treatments next month to help loosen some of her muscles.

Riley’s future is so uncertain, as is the nature of a traumatic brain injury. Every case is different. The brain controls everything, and the healing process is very slow. She faces years and years of continued therapy. My husband and I remain optimistic, because we love our daughter and refuse to believe that this is the way she will be forever. We want our daughter back. We will continue to provide Riley with everything she needs to work toward recovery, no matter what that entails. Every small accomplishment is huge for us. Her smile and laugh gets closer to the one we remember, a simple function that took Riley almost 8 months to gain back. We continue to hope. Riley has proven to be stronger then any other person I know, even at the age of 6. She is my inspiration. The doctors have prepared us for the worst case scenario- that Riley will stop improving, and that she will require assistance with everything for the remainder of her life. My husband and I realize that this may be Riley’s reality, but we choose to take each day as it comes, to be grateful that our daughter is still alive and with us, and to provide her with all of the love and support she deserves on this journey. We will deal with each issue as it comes and are still trying to pick up the pieces, focus on the future, and move on.

Friday, March 25, 2011

Jeremiah's Story




Jeremiah was born on December 21st, 1997. He was an amazing baby. Every parents dream. He was never sick, never spit up and never cried. He was always laughing and smiling. Things changed for us on June 7th 1999. We had a family friend from Arizona come stay with us for the summer. My husband and I lived in Phoenix when I got pregnant with Jeremiah and decided we needed to be close to family back in Oregon. This was going to be my mom and dads first grandchild and they wanted us back here too. On June 6th 1999, Jeremiah was diagnosed with croup. So I decided to not send him to the regular babysitter. The family friend said he would watch him for a few hours till Jeremiahs dad came home. I left the house at about 3:00 so I could clock in at 3:30 pm. Well, I started work and it was like any other day. Untill the phone at my register rang. The woman on the other end told me to pick up the other line, that I had a call. It was his regualr baby sitter, telling me that she was calling an ambulance because Jeremiah wasnt breathing right. I said ok. She asked him which hospital did I want him taken to. I said to St John's Hospital in Longview, WA since they were the ones that diagnosed him with croup the day before. I grabbed my till and went down to the counting room. Everyone down there told me not to worry about it and to just go. I walked out of the counting room and they handed me the phone again. It was the babysitter again. (not the family friend) She told me that they had just left with him and were taking him to Emanual Trauma Unit. Then I knew it was more serious. But I did not expect what I heard when i got there. When I arrived, I waslked past 2 Portland police officers. But this was a main hospital in Portland and the police were always there. I walked in and saw the family friend there trying to spell our last name. He was acting like he was there for a sliver or something. But when the police and a case worker came up and asked me if I was Jeremiahs mother, I knew something was very very wrong.
I started yelling that I wanted to see my son and they said I couldn't. That he was being prepped for brain surgery to save his life. I should have said something to the family friend then, because thats when he curled up in a ball and started crying. But I didnt care. I just wanted to know what was going on. I called my husband and he came as soon as he could. He arrived right after my mother did. We sat in this room for 5 hours hearing occasional updates on his surgery. During this time, the detectives from the St Helens police department were pulling Jason out (family friend) they pulled me out, and Jeremiahs father. After the surgery, they told us that he was in his ICU room and that we could see him. We walked into his room and I couldnt believe what I saw. I didnt recognize my own son. I stood frozen. There were tubes comming out fo his head, IVs in his arm, a breathing tube in his mouth, and bruises. So many bruises. On his cheeks, his ears, his throat, and both eyes were black and blue. They started going over the worst case senario. He suffered a stroke to his left side, so he may never walk again. He had blood in front and behind both retnias, so he could be blind. He could have CP and seizures for the rest of his life. That was if he ever woke up from the self induced coma they put him in, so his brain can rest and heal. BUT..they never said the words "Shaken Baby Syndrome" Not yet anyway. Jason sat at our house for 4 days, eating our food, watching our TV, using our phone, while we sat at our sons bedside, praying every second of every day that he would pull through this. 3 days later, after going to get something to eat, I went back up to Jeremiahs room and the head nurse told me there was a phone call from some one named Tina. This was Jason's aunt. I called her back and she told me that Jason's mom had had a heart attack and that they had a plane ticket waiiting for him at the airport to fly him home. I called the St Helens police dept and told them what was told to me. They said dont do anything . We will take care of this . 4 hours later , 2 of Jeremiahs ICU doctors, 2 nurses and a case walker, walked into his room. They closed the sliding glass door to his room and closed the curtain. While they are walking in, the phone is ringing, I answered it. It was the detectives. They told me that they had just arrested Jason. It was like some one took a 2x4 to the back of my legs and to my chest. I hit the floor, sobbing. Jeremiah's dad hugged me screaming what was wrong and I told him Jason did this. Mike started heading for the door, when the doctors stopped him and said "You need to be here for your son right now, but we want you to know, this is what we call Shaken Baby Syndrome." They kept it from us for 4 days, while Jason sat at our house. I was mad because the whole time they were protecting Jason from my husband. Now I can see why they did, but at the time I was furious they didnt tell us.
We were at the hospital for 6 1/2 weeks. In this time, Jeremiah got his vision back, and was able to talk again. There still was no movement on his left side though, but that never slowed him down. We were home for about a month before Jeremiah started dragging himself to the couch to teach himself to walk again. And he did. He didn't give up. Jeremiah is 13 now and as tall as I am. When he was 5 he even played soccer. He doesn't have siezures. They did put a feeding tube in, but removed it 8 weeks later. By talking to him, you would never know anything ever happened to him. But you can see the trauma of it all. 4 scars on his head. His left arm is bent and his wrist hangs limp. He walks with a limp on his left side, but the wonderful doctors at Shriners are working on all that. They have already done one surgery to his arm and 2 to his leg. Funny, but when he finds out he has to have surgery again, he is ready for the video games to be brought to his bed. Since he's not upset by all of it, I can't be either. He keeps us all strong :) Jason was charged with 2nd degree assult and recieved 5 years 10 months. We didnt find out till court that Jeremiah was strangled right along with being shaken. He was also hit in the face and thrown to the floor. I am not sure who was looking out for my son, or who his guardian angel is, but I can't thank them enough. Sometimes life throws you in directions you cant control. Throws you in directions you hate. When I look into my sons eyes, I see his strength, his love, his compassion. And from that he teaches me. He is my super-hero.
Thank you for listening to his story . He thought that he was alone. That he was the only one that this had happened to. Untill we came across this website. Now he knows. God Bless each and every one of you and your families.
Mike , Dena , Jeremiah , Tyler

Wednesday, March 23, 2011

Gavin's Story

Gavin was born on October 14th, 2009 at 6:14 pm. He weighed 6 lbs 10 oz and was 19 inches long. He was perfect. He was a healthy beautiful baby boy. Gavin was a happy baby. He always ate well, sometimes more than you would think an infant that small could eat. He took naps throughout the day like any other baby and only woke up at night to eat and then fell back asleep fairly quickly afterwards. He hardly ever cried and when he did he sounded more like the Aflac duck, than a baby crying. He was almost always quickly comforted with a new bottle or his favorite orange binkie he had had from the day he was born. He was what most people would consider an easy baby. His smile could easily light up the entire room and having him fall asleep on your chest was the best part of any day.
On December 21, nine and a half weeks after Gavin was born, we all got a phone call that you never want to get. Gavin was being rushed to the hospital in an ambulance because he wasn’t breathing. Members of the Appomattox Rescue Squad responded to the 911 call and we were later told it was one of their quickest response times ever. They performed CPR at the scene and kept Gavin stable in their transport to Lynchburg General. After arriving at the hospital, we all sat in a small waiting room where seconds felt like hours. We were then told Gavin would need to be transferred to Roanoke Memorial. I never knew Roanoke was so far away. That drive took several days at least. After arriving at the hospital, we were taken into another waiting room and sat down with a leading doctor in the NICU. There are many events from this story that will forever be etched in my memory but those few moments listening to that doctor tell us what had happened to Gavin that day will always be in the forefront of my mind. She told us Gavin had bleeding on his brain that was caused by a traumatic brain injury. She also told us the retinas of his eyes were detached and there was blood pooled behind them as well. She went on to tell us that this brain injury had in no way been caused by any type of accident. It was only later that the term “Shaken Baby Syndrome” was used to describe what had been done to Gavin.
The next six weeks that Gavin spent in the NICU at Roanoke Memorial are somewhat of a blur.
The first several days were the most critical. Gavin had several bouts of seizures and for the most part, was completely unresponsive. He was on a ventilator that was doing most of his breathing for him and he was being fed through a tube in his nose. Walking into his room for the first time was extremely difficult; seeing him lying in that big bed, so tiny, hooked up to several different machines with tubes and wires coming from all parts of his body. It’s an image that I will never forget. However, with each passing day, we were given more and more hope. On the 23rd, Gavin opened his eyes and moved his arms and legs a little bit. By Christmas Eve, he was breathing more on his own. Gavin spent his very first Christmas where no child should, lying in a hospital bed fighting for his life.
On December 26th, another tragedy struck the family hard. Gavin’s uncle Cody was killed in a car accident. While it all seemed practically unbearable, I believe God needed an angel to watch over Gavin and he chose Cody to do just that. Just a couple days later when Gavin was being talked to about Cody, he smiled for the very first time since being in the hospital. I truly believe Cody talks to Gavin and will always watch over him. By the first of January, Gavin was moving his arms and legs a lot. We were told it was the nerve damage causing his movements but we were just so happy to see him active. However, it was around this time that the leading neurological doctor in the NICU told us what she believed the outcome for Gavin would be. She said it was very likely that because of his brain damage, Gavin would never be a normal child. He would not meet developmental milestones. He would probably never walk or talk. It was very possible he would be blind and deaf forever. And there was a chance he could be in a vegetative state for the rest of his life. This was the most devastating news you could ever be told about someone you love. What else could we really do but put our faith in God and pray that this would not become a reality.
On January 6th, Gavin had surgery to have a trache put in for him to be able to breathe on his own and a feeding tube put in his stomach for him to able to eat. At this point, Gavin had no gag reflex nor could he swallow properly so the trach was necessary so we could suction his airway for him to breathe. After this surgery, Gavin’s face was tube free and it was a beautiful sight to see. On January 14th, Gavin was moved out of the NICU and to Kluge Children’s Rehabilitation Center in Charlottesville. This was very exciting as it showed Gavin had improved enough to begin therapy. Within the month he spent at Kluge, Gavin showed improvements working with his speech, physical, and occupational therapists every day and we learned to celebrate the small successes. Around this time, the doctors at UVA re-examined Gavin’s MRI scans which showed that he had older brain injuries that occurred before December 21st. They told us that Gavin had been shaken on a total of three to five different occasions. Because of this information, the investigation of Gavin’s injuries is still on-going. On February 12th, Gavin was released from Kluge and came home to his foster parents, his great-aunt and uncle. Patricia and Floyd Wood are who I consider to be two of Gavin’s angels as they are now his adoptive parents and quite possibly the best thing to ever happen to Gavin.
As of today, Gavin is a lively and extremely happy 16 month old. He can see perfectly fine. He hears everything that goes on around him. He smiles constantly. He even laughs when something is funny and I mean belly laughs to the point where he can hardly catch his breath. Gavin still has his trach and feeding tube; however, there is talk of possibly removing his trach sometime this year. He also has a button to place over his trach so he is now able to make noises, which are pretty much some of the sweetest sounds I’ve ever heard. Gavin is able to roll over and has enough head control to be able to sit in a specialized chair by himself. He is being fitted for leg braces and a chair for him to be able to stand up and hopefully walk one day. He is doing everything in his power to prove that doctor in Roanoke completely wrong. Gavin is nothing short of a miracle. He is one of God’s miracles.
Gavin has been a blessing in my life. I know he was placed in my life for many different reasons but I strongly believe that the main reason was to show me how amazing and powerful God truly is. Gavin, a nine week old baby, brought me closer to God. He made me believe. He showed me the true meaning of faith. Even in the worst of situations, especially in the worst of situations, God is always there with you. He has a plan for your life. And He will never leave you. Throughout all of this, I have come to rely on the Bible verse of Jeremiah 29:11 “For I know the plans I have for you, plans to prosper you and not to harm you, plans to give you hope and a future.” Because of this verse, I know God has a beautiful future planned for Gavin and for each one of us.
While I came here today to give this testimony to God, I also wanted to use this opportunity to educate you about Shaken Baby Syndrome. In America every year an estimated 1,200 - 1,400 children are shaken for whom treatment is sought. Of these tiny victims, 25 -30% die as a result of their injuries. The rest will have lifelong complications. Long-term consequences can include learning disabilities, physical disabilities, visual disabilities or blindness, hearing impairment, speech disabilities, Cerebral Palsy, seizures, behavior disorders, cognitive impairment, and even death. Often, perpetrators shake an infant or child out of frustration or anger. This most often occurs when the baby won't stop crying. I ask you today, please, if you ever get frustrated while holding a child, place them in a safe place and walk away. Take a few moments. Take some deep breaths. Do whatever you need to do to calm down before picking the child back up. It only takes a few seconds to permanently injure a child and change their life forever. It also only takes a few seconds to share this information with someone you know. Thank you for listening.

~Jenny

Saturday, March 12, 2011

Coming Home - By Steffany DeWitt

Families, Friends, and Supporters

I wanted to take this time to let you all know what is going on with me. As I am very happy and believe strongly in this network, I am taking the time to step back from the network for a while due to things that are coming up in my life right now. As some of you may not know, my husband Michael is currently deployed to Afghanistan and has been gone since March of 2010. I have not seen him but all of two weeks in the past year. Although, the network is very important to me, I have decided to step back and take the time in welcoming home my husband and get our life back together as it was before. Michael and I were married in November of 2009, and were only able to spend 5 months together before he deployed. Before we were married, due to him being in the Army we were only physically together a week. Right now I believe I need to take the time and focus on my family. As the network is very important to me, my husband and son are the most important things in my life right now. I am very excited to finally get to welcome home my husband. I am not leaving the network permanently; I am just stepping away for some time.

Although a lot of work has been done and I have been grateful enough to help, I unfortunately will be unable to attend the candlelight vigil this year. I will miss meeting you all, but I will be there in spirit. I am so happy that I have been able to help out with funding this year to the vigil and hope to return soon so we can get working on next year’s vigil as well.

I want to thank all of you for opening your arms and hearts for letting me be apart of a wonderful family. We all have been there for each other through thick and thin and my return will be better than ever. Again, know I am not leaving forever, just stepping away to take time for my husband, our son and myself. I am very excited to see what our future brings and hope to return to the network better than ever.


Thank you everyone!!

Steffany DeWitt
Mother to Dominic DeWitt-SBS Survivor

Friday, March 11, 2011

Dreams of a Princess - Chance of a Lifetime!

Family and Friends,

As you all know, on February 19, 2011 my best friend and love of my life proposed to me. Through heartache, grief, loss, and the tragic death of my daughter Madilyne, I never knew my heart could love as it does today.

I moved to Little Rock from Florida in July 2009, after the great travel from FL to NYC to Arkansas, to journey on my life path to make a life from the dreams within my heart. After dedicating all of my heart, my time, and my effort into the Legacy presented by the beautiful life of Madilyne, I am thrilled to share this news with all of you concerning our engagement. An opportunity of a lifetime has presented itself to us, and wanted to ask for your help.

Jamie and I have entered this contest for a chance to win $100,000 for the wedding of our dreams with a celebrity wedding designer from Crate and Barrel! This is so exciting, but short notice, and will only take you 2 seconds to vote. Simply click the link below which will take you to our page on their website and click vote. One vote per person, and please pass along to all you know! We need at least 3000 votes in the next 20 days to be in the top 100 that will go to a judging panel and winner will be announced in June 2011!

This is very exciting as an opportunity to not just have the wedding of our dreams, but also have ALL of our friends and family in attendance as this will help with travel accommodations for those near and far!

Thank you for your vote and keep passing along, we don't usually ask for something as such but this would truly be such a blessing for not only us, but for the memories we hope to share with everyone in March 2012!

Here is the link - http://www.ultimateweddingcontest.com/entry/153006

Love you all!
Jamie and Rachel
Mother to Madilyne <3 SBS Victim Age 10 months

Friday, January 21, 2011

SBS T-shirts and Merchandise Now on Sale!




Hello!

Just wanted to post a quick blog note to all of our readers to let you know that the 5th Annual Shaken Baby Syndrome Candlelight Vigil t-shirts and merchandise is now on sale on our website! This year we added long sleeve shirt options, as well as a few new items as well! Be sure to stop by our merchandise page at www.shakenbabysupport.com and help fund family's travel expenses to attend this years vigil in Sarasota Florida April 15, 2011 at 7pm. No contribution is too small be it donation or by purchasing merchandise. We need YOU to make this our biggest and best vigil yet! More information is available on our website as well concerning this event!

Sponsorships are available as well by contacting Rachel, at rachel@sbssupportnetwork.com. There are MANY levels as well as services needed. Please take a moment to read the letter below concerning this years event!

________________________________________________________________________________

Light the Sky

5th Annual
Shaken Baby Syndrome Candlelight Vigil
Sarasota, Florida

You are cordially invited to the 5th Annual Shaken Baby Syndrome Candlelight Vigil in Sarasota Florida, April 15, 2011 7:00p.m. Suncoast Family Life Center, 8000 Hawkins Rd, Sarasota Florida 34241. This year we are gathering the top advocates in Child Abuse and Shaken Baby Syndrome Prevention to speak to the families affected and the general public to bring attention to the severity and increasing cases of Shaken Baby Syndrome in our nation today.

On April 15, 2011, SBS Survivors and Victims families will fly in from across the globe to attend this event.

The mission of the Annual Candlelight Vigil is to bring together families with shared circumstances and raise awareness about Shaken Baby Syndrome. Information regarding medical treatment and therapy assistance, as well as information on how to handle grief will be available to all who attend. This event also works to establish a support system for families of SBS victims and survivors. By linking families together who have shared this traumatic experience, we can help each other to learn, to grow, and to prevent this from happening to other innocent children.

The Shaken Baby Syndrome Support Network Inc. are asking you to empower victim and survivor families and sponsor a family waiting to attend or donate items needed to ensure this vigil is a great success. Together we can help families dealing with extreme life changing events to comfort their hearts so they can maintain a life unforeseeable after the tragedy of Shaken Baby Syndrome has come forth in their lives.

For the families ongoing healing and support process, Child Abuse and Shaken Baby Syndrome Advocates from across the United States will be present for this event to speak to the families and provide insight into the steps for a healthy transition as these families walk through the grief, and anger associated with this tragedy.

We invite each and every one of you to meet these families April 15, 2011 in Sarasota Florida at the 5th Annual SBS Candlelight Vigil. The Network welcomes speakers to include, Major Connie Shingledecker - FBI National Academy 185th Investigative Bureau Chief Manatee County Sheriff's Office, Christina K. Farnsworth – Victim Advocate Coordinator Sarasota County Sheriff’s Office, Darryl Gibbs – educator, lecturer, and legislative advocate Founder Cynthia Gibbs Foundation and Victim’s Advocate- Homicide Specialist for the Westchester County District Attorney’s Office in New York State, Scott Juceam – Father to Hannah Rose Juceam, and Founder of the Hannah Rose Juceam Foundation, Janet Goree – Grandmother to Kimberlin West and early childhood educator/SBS Advocate, Patrick Donohue - Father to Sarah Jane Donohue and Founder of the Sarah Jane Brain Foundation, and many more to be announced in the coming months! We hope to see you there!


Registration and Sponsorship forms are attached for your use and please visit our website for additional information. http://www.shakenbabysupport.com

We thank you for your support, and please call with any questions or additional information at 877.571.4675 or email rachel@sbssupportnetwork.com

Sincerely,


Rachel A. Sumner
Shaken Baby Syndrome Support Network Inc.
Founder/CEO

Tuesday, January 11, 2011

Now Taking Child Names for Vigil T-shirts! (AWESOME OPPORTUNITY!)

(consent form enclosed at the bottom. Please read ALL information prior to submitting request)

We are currently taking names for our 2011 5th Annual Shaken Baby Syndrome Candlelight Vigil. These t-shirts display the names of victims and survivors. This consent form must be submitted by emailing angela@sbssupportnetwork.com. Due to privacy reasons, this has to be submitted by the parent, grandparent, or guardian of our hero. We will continue to take names until January 30th, 2011 but only have a limited about of spots on the t-shirt. You will not receive a confirmation email unfortunately, however you can check the t-shirts as always on our website, blog, FB group page, or through our member page on our website.

Each year we gather names for our t-shirts and this is a first come first serve basis. The names are placed on the t-shirt in *no* particular order, as we usually in the final proof, list in the order of alternating gender of the child. At some point we may be unable to do so, but know these t-shirts are just as important to you, and we will verify with you by sending the final graphic in a email for you to ensure your child's name in spelled correctly.

These t-shirts are sold to fund the Annual Candlelight Vigil, and to provide scholarships to families on our waiting list to attend. Our wait list currently has 57 families, and you can sign up by submitting an email to permission@sbssupportnetwork.com with your name, address, telephone number, relationship to child, child's name, your phone number, and closest international/national airport.

The t-shirts go on sale February 15th, and are made to order. When you place your order you are guaranteed your shirt by the date of the vigil. The last day to order is March 30th. The price of the t-shirts will be the same as previous years, and we will have children's sizes available after our first order of adult t-shirts.

Adult Small-XL $20.00
Adult XXL- $22.00
Adult XXXL - $24.00

These prices *include* shipping.

Please pass along this information to all hands, and we hope we can Light the Sky in April 2011 for all the victims and survivors of Shaken Baby Syndrome, and Child Abuse!

Thank you,
Rachel
rachel@sbssupportnetwork.com

______________________________________________________________

Consent Form

I, (Your Name) give permission to the Shaken Baby Syndrome Support Network to use (Childs Name) name on the t-shirts in support of the 5th Annual Shaken Baby Syndrome Candlelight Vigil to be held in Sarasota Florida Friday April 15th, 2011 at 7pm.

Thank you,
(Your Name)
(Your Address)
(Your Email)
(Your Phone Number)
(Relationship to Child)