BENEFITING: The CJ Foundation for SIDS, Inc.
ORGANIZER: The CJ Foundation for SIDS, Inc.
EVENT DATE: Nov 06, 2016
On April 10, 1993, my family’s life changed forever. My cousin, Carly Jenna Hollander, died at just 4.5 months old of Sudden Infant Death Syndrome (SIDS). Since Carly’s passing, my Aunt Susan and Uncle Joel have dedicated so much of their life and so many of their resources into creating the CJ Foundation for SIDS. Their hope was and continues to be that what happened to Carly will not happen to other infants and that what happened to their family will not happen to other families--- so that no other parent will have to feel the pain- the type of pain that never goes away- of losing their baby.
Throughout my life, I have run and cycled for many different causes and have always been amazed at the support that I received from my community of family and friends. This year’s race, the 2016 New York Marathon, is different than any other event that I have ever participated in—while I am running in Carly’s memory, I am also running for my Aunt Susan, Uncle Joel, Cousin Sam and Cousin Jackie, otherwise known as the “silent heroes” of the SIDS community. As you will soon learn, the CJ Foundation for SIDS’s impact is unquestionable, as SIDS deaths have been reduced to more than half since the Foundation was started in 1994. The 26.2 miles that I will run on Sunday, November 6 and the funds that I will raise in the meantime are not just for Carly but they are for my Aunt, Uncle and cousins’ who turned a tragedy into something that changed the SIDS community forever and provided other SIDS families with an advocate while sparing so many others from experiencing the grief of losing a child.
I will forever remember the morning Carly passed- my mom received the phone call from my Aunt and my brother, sister and I were immediately woken up by mom’s hysterical cry. But this isn’t about me and what I remember, so let me tell you about how the Hollander’s remember this day. My Aunt and Uncle woke up at 7am and Sam (5 yrs old) and Jackie (2.5 yrs old) were playing quietly and they remember how they both commented on how great it was that maybe- just maybe- Carly had begun to sleep through the night. At 7:20am, my Uncle got out of bed to go check on Carly and bring her in for her morning feeding. When he bent down into her crib, he saw that she was blue and when he grabbed her, she was cold. Within seconds, my Uncle was holding her up in the doorway of their bedroom and my Aunt immediately screamed “it’s SIDS.” As my Uncle started CPR, my Aunt called 911 and within minutes, their house was filled with emergency medical technicians and police. My Aunt, Uncle and cousins watched as Carly was strapped to a board and the EMT’s tried to revive her. After 30 minutes, they were told that Carly was gone.
In that very instant, my Aunt, Uncle and Cousins’ experienced a type of grief that no one should ever feel. My Aunt describes it as “the most numbing and painful grief that you could imagine.” Within hours of Carly’s death, my Aunt and Uncle were at the funeral home picking out a casket for their daughter/my cousin to be buried in. They describe the days that follow as somewhat of a blur as they went through the motions of their lives the best they could.
In the weeks that followed, my Uncle went back to work and my Aunt tried to take care of Sam and Jackie- they still had two young children who needed care and attention. There were moments when my Uncle remembers my Aunt calling him from a traffic light when she was driving the kids, having no idea how she had gotten there or where she was going. During my Uncle’s second week back at work, he came home only to find my Aunt in a fetal position inside Carly’s crib. At that moment, my Uncle knew that the time had come for them to get help. They found the SIDS Center of New Jersey and participated in group meetings for a year. They met other SIDS parents and now belonged to a community that they had never imagined for themselves. They remember feeling alienated from other friends/ family and only feeling comfortable around other SIDS families.
While Jackie was only 2.5 years old and Sam was 5 years old when Carly passed, they both remember the day vividly- the EMT’s and police running around the house while their parents were frantic. Jackie watches my relationship with my sister, Hannah, and her friends who have sisters and always wonders what could have been if Carly was still alive. For those of you with sisters, you understand that there’s nothing quite like it. Sam, of course, wonders what it would have been like to have two sisters but always talks about how proud he is of his parents for founding the CJ Foundation for SIDS and turning a tragedy into something positive for so many others. He feels like this was a life-lesson that shaped the way him and Jackie were raised and how they were taught to deal with difficult situations.
On the morning of April 12, three days after Carly passed, my Aunt and Uncle’s good friend, Don Imus went on air at WFAN Radio where he devoted his entire show to talking about SIDS and the devastation and unconceivable loss that my family had just experienced. Within two weeks, listeners from around the tri-state area had sent money and checks into WFAN in memory of Carly Jenna. Shortly after that, they had $90,000 on their dining room table. Within that time, my Aunt and Uncle had begun to delve into understanding what SIDS was, what research was being done, and what support services were being offered around the country. They donated the money to a now-defunct SIDS organization that they found on the internet.
After spending a significant amount of time searching for the kind of organization my Aunt and Uncle thought was necessary for the needs of SIDS parents, they came to realize that no such place existed. My Aunt and Uncle wanted to provide money not only for research into the causes of, and a possible cure for SIDS, but also for programs that would educate parents on risk reduction. They wanted to help parents and siblings deal with the effects of a death of an infant in their family. After much deliberation, my Aunt and Uncle started the CJ Foundation for SIDS in 1994. It was then that they approached Don Imus to discuss the CJ Foundation for SIDS being the benefactor for the next Radiothon. Without hesitation, Don agreed and by the end of the first Radiothon, they had raised $1 million which was the seed money needed to get the Foundation started.
Since its inception, the CJ Foundation for SIDS has raised over $40 million and has played a pivotal role in the SIDS community, identifying cutting edge research, raising awareness, and providing critical bereavement services in almost every state in the country. As I mentioned above- the results are astounding. SIDS deaths have been reduced to more than half since the Foundation was started. Today, the CJ Foundation for SIDS is recognized as the largest non-profit SIDS organization in the country. While the Foundation has made and continues to make tremendous strides in the flight to eliminate SIDS and all unexplained infant deaths, there is still a lot of work to be done:
- SIDS is still the number 1 killer of infant babies today
- Parents who have experienced a SIDS death are still wracked by grief and guilt
- Babies still sleep in adult beds putting them at a greater risk of SIDS
- Babies are still sleeping on their stomachs
- Mothers are still smoking during pregnancy
- Babies are still sleeping on soft bedding
- There are still bumpers in cribs
- Babies are still dying in day care center
It has always been my Aunt and Uncle’s hope that their efforts to raise funds will one day contribute to a world where no parent will have to face the tragedy of losing a child. The money that I raise through this fundraiser will bring us one step closer to making this a reality. The Hollander’s fight day in and day out for the SIDS community and now it’s time that I fight with them and in memory of my precious cousin, Carly. Please help us get closer to eliminating SIDS by making a contribution to my fundraiser. Thank you so much in advance.
I love you Carly, Sam, Jackie, Susan and Joel <3>
All my love,