UPDATE: Shaken Baby Syndrome Candlelight Vigil and Family Reunion

Hello! I know many of you have been waiting for information concerning the 6th Annual Shaken Baby Syndrome Candlelight Vigil and Family Reunion, and I did not want to keep you waiting.  We do not have a lot of information at this time, but we do have the important details worked out!

We worked very hard to have the event in Kansas City, however the resources are just not there as of yet.

With that said, here is the information I would like to share with you.  The 6th Annual Shaken Baby Syndrome Candlelight Vigil and Family Reunion will take place Friday April 19th 2013 through Sunday April 21 2013 in Little Rock Arkansas.  Friday the vigil will take place, and Saturday will be our Family Reunion with many more events jam packed into this weekend!

Currently, Rachel is working on the t-shirt designs as you all know this event cannot happen without the sale of t-shirts as our way to pay for the costs in hosting!  We will also have a sponsorship form available by next week, if there is anyone who would like to be a sponsor, we welcome you with open arms!  Please make sure to follow us here on our blog, as we all our Facebook page https://www.facebook.com/shakenbabysupport for all of the up to date information!

In the next few days we will have a permission form, for the chance to have your 

childs name on our t-shirts! 

Here we go!  We hope to see as many of you here that can come! If you have any questions, you can contact us at contact@shakenbabysupport.com!

Best!
SBS Support Network Family
http://www.shakenbabysupport.com

Let us light the way for the future of Shaken Baby Syndrome Awareness and Prevention

It is unfortunately no secret within the Shaken Baby Syndrome Community, that there are some who can not seem to agree or even agree to disagree.  We bring to you a campaign pledge for the interest we all share, the education and awareness of Shaken Baby Syndrome.

Each Survivor, each Angel, has a voice, and that voice is you.  No one could ever truly know how you feel, no one could ever truly tell you what path to take on this journey.  We all know that this is a preventable tragedy, and there is one thing we must do to continue forward with a mass, the world has never witnessed.

I am going to take this time to tell you what I am promising to everyone affected by Shaken Baby Syndrome.  My daughter Madilyne was an unfortunate victim taken too soon.  Many of you know our story and have learned throughout the years the struggles I have faced, the foundations that have crumbled under my feet, and the challenges I have taken on, because I know the most important task here is to strive to save the children of tomorrow.

Our Network started out with just 3 families back in 2007.  3 families.  Today we stand at over 50,000 families we have successfully been able to network with other families affected by Shaken Baby Syndrome as a resource for healing, learning, and the betterment of the lives of our Survivors.

The shackles are coming off, the walls are coming down.  I am 150% ready to take the restraints on my heart off, open the bandages to reveal the scars, and make myself 100% vulnerable to start this campaign.  The Network was built to be support provided by the families for the families of SBS.  It has done just that.  However, there has always been an understanding that the Network was not made to be the biggest, not made to be the best, and sure as heck not made to be an influence to enforce disagreements between families, organizations, or supporters.  The situation at hand is this.  You can come to the Network any time, day or night, and receive support.  I am the parent of a victim, and if you came with a Survivor whom was 14 years old having issues with development issues, I would not be the person for you to speak with, but I would find you someone with the closest situation as possible for resources and support to help you grow.

There will always be a great difference between families of Survivors and families of Victims.  However we must each understand the importance of not expecting either type to know how we feel, and we must never proclaim to understand what they're going through, because the truth is, we do not.  What we can do, is to support each other, and not lash out at each other just because we disagree on a topic, on an event, or on the "ethics" of an individual.  We have each walked a path that no one rightfully should.  All we need is each other, and to ensure we are connecting with those who can provide us with the comfort we are searching for.

We must make ourselves vulnerable, take off our shackles, and take down the walls so we can stand together as one, to make this cause of Shaken Baby Syndrome, powerful enough to take on the entire population of the world.  We must set our egos down, and know that no matter what someone else is doing, we are doing everything we can in our hearts, as we dream, without throwing backlash to anyone for what they do.  We must also face disagreements head on, face to face, and not create an under current of buzz about this person, that person, or organization.  Haven't we all been through enough?  How bad do we want the world to prevent Shaken Baby Syndrome?  How much of a strive can we take together to make this happen to paint the world blue in the month of April?

Set the disagreements down, I am not asking you to forget them, I am asking you to set them aside because the issue at hand is much larger than any disagreement or quarrel.  We can see the candle light from this post forward, and we can do so by ensuring the picture below is on every site, every social media outlet, blog, and postings.  If you agree to set down egos, disagreements, and hard feelings against each other in the SBS community, I am asking you to change your twitter profile picture, your blogger account picture, your Facebook picture, and so on to the picture below.  (Right click, save as, to save to your computer for upload)  Also please ensure to share this post with every family affected you know, for the origination of this pledge is simply a candle, lit as one, turned into a fire in all our eyes.

Please hold my hand, because together as an army of families affected, we together can make huge strides together, rather than alone.

All my love, thoughts, and prayers,
From all of us at, The Shaken Baby Syndrome Support Network

{ A Tribute to an Extraordinary Man }

In April 2011, families gathered from across the world in Sarasota, Florida for the 5th Annual Shaken Baby Syndrome Candlelight Vigil. Some came as far as London, England, in support of all the children and families whose lives have been devastated by Shaken Baby Syndrome.

Organizing this event each year is such a joy, and done through the eyes of Madilyne's Legacy, the Legacy that built the Shaken Baby Syndrome Support Network. Her Legacy began when just 4 families gathered together, hoping to meet others impacted by this horrible tragedy, in an effort to have someone there, that just might know or can try to understand "what its like"...

Have you ever met someone whose life has not been touched by Shaken Baby Syndrome, but they offer a support greater that they themselves could ever imagine? I have...

I remember in April being at my father's house with all the other families, and there was someone there that I was to meet for the first time. He was an attorney, who proclaimed to fight for our children.. With the background I come from, I have to be honest with you, if their name is followed or introduced with the word Attorney or Lawyer with it, I must say I am so very skeptical, because of the individual that traumatized me as a mother some 6 years ago, questioning the love I had for my child, simply because I did not refrigerate medication, that only needed to be for "better taste"...

I was so apprehensive.. I must admit, however in walks this man, flowers in hand, and the compassion that came from the introduction, can simply not be put into words. I had to know more, I had to know what this man is about. I had visited his website numerous times, read his Shaken Baby Syndrome Blog, found him via youtube, and the videos he made for our SBS Heroes.. but meeting him changed everything. Though his profession is an attorney/lawyer, he himself is so much more than that...

His name is Christopher Keane.  He has dedicated his life, his entire being, to protecting and finding justice for our heroes. If there is any word of expression past beyond the call of duty, he is that my friends.  Yes, he is an attorney, but he is an attorney who CARES.  Coming from a Mother, where trust in our legal system failed so many times, I can not display or begin to put into words how truly amazing this man is, and how many lives of those devastated by Shaken Baby Syndrome he has touched.

Why do I say this? He is not seeking answers from us.  He is seeking answers beyond us, for our children.  If he can, he will. If it can be done, you can count on him. He listens. He doesn't forget your child's name like many attorneys, he does not forget the day/time the tragic act against our heroes occurred. He comes to you. If he can do anything for you he will.  He gives advice from the heart, not a book.  Though very intelligent, he puts all of his learned knowledge to the side, to learn of the "real" act committed against our children, and though his life has fortunately not been touched by such a horrendous act, he is able to put himself in our shoes, even for a moment, to know what he himself would expect of an attorney/lawyer should he be in those shoes. Ever.

There is no one like him. Every client he has ever had, is never a client, but a life friend, whom he continually keeps in touch with beyond any trial, or judgement awarded in any case.  He is here for us. For our children.

Are you in the middle of, or preparing for trial? Need some advice from a friend, have concerns, or just need to talk to someone that will give you honesty and direction? Need help paying for those medical bills   or funds needed to care for your Survivor. He is here for us. He is on Facebook, Twitter.. He has a Blog, a Website, and you can even contact him now by clicking here.

If I can personally say anything about this man, let it be known.. Though our case has been long closed, without conviction, he has given me life, and hope that when this tragedy occurs, there is someone there for US, that has answers to all of our questions, whether he personally knows the answer himself, or can network us to someone that does. He has changed my life to know Madilyne's voice will never be silenced by an act of violence, and he carries in his heart her Legacy for her life to be known.

Chris, you are amazing beyond anything your being could ever show you. Thank you for what you have done for me, in my life, and for all of the families of Shaken Baby Syndrome.

With Love,

Rachel 

Mother to Madilyne Wentz

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!

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!

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.

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.