There are no words to express the devastation that my family and I have lived through.
I have created “Team Jared” in honour of my late son Jared Aaron Benzekri and for the children and families of Chai Lifeline.
I am the mother of 3 boys; Ethan (13), Noah (11) and my late son Jared, forever 8 years old.
It was on November 24, 2014 that we noticed something was wrong with Jared. His physique and balance were off.
After spending the night at the Children’s Hospital, we received the worst news that any parent could ever imagine.
Jared had what is called DIPG, short for Diffuse Intrinsic Pontine Glioma. It is a brain tumour located on the pons of the brain. This is the area that controls breathing, talking, walking, swallowing, sleeping, heartbeat and all the most important elements of survival. To date, there is no known cure for DIPG. It is inoperable and does not have a good end result.
I lost my mind. There is nothing, NOTHING as painful as hearing the Doctor say “there is nothing that we can do” while giving us an estimate time of 6 to 9 months of survival.
Anyone who met Jared was always greeted by the most delicious cheeks and a warm smile. His eyes could gather a crowd and he would open the car door while saying “ladies first.”
Jared always knew that he had a brain a tumour but never complained about anything. He was very easy going, always helpful, a kind soul and very family oriented. DIPG robbed my son and paralysed him two months before he peacefully passed away at home with his family.
Jared’s death has forever changed our lives. After all, we are not supposed to outlive our children. It goes against the natural order of life. We would have done anything to save our precious son, but lost the battle on September 28, 2015. Thank G-d he had no pain.
Chai Lifeline appeared in our life by someone who had heard about Jared and gave our names. At first, I thought it was a prank because I had never heard about them before and I was not sure what they could do for us.
They are the most incredible organization that I have ever met. They were, and still are, very involved in helping us in any way they can. While at the hospital or at home, they have always stood by us.
We had the privilege, and the most amazing time as a family of 5, when we were invited to a family retreat at Camp Simcha, where Jared was supposed to attend as a camper that summer. We met so many people from all over the world that are dealing with life threatening pediatric diseases. We shared stories, advice and connected with other families while not feeling completely alone.
I have made friends under the most horrifying moments of life and I plan on always keeping in touch with them thanks to Chai Lifeline.
The volunteers at Chai Lifeline are angels in disguise. They are present at times when you can’t even think and have no real idea of what you should be doing. They help in any way they can, even when you don’t ask for it and expect nothing in return.
Having lived through shook, disbelief, hope, sadness and forever grief, I would like give back to Chai Lifeline in honour of my belated son Jared Benzekri. This will help other children and families that are affected by any childhood diseases.
I will forever be indebted to everyone at the Donald Berman Chai Lifeline and anyone that stood by us during this very difficult moment in life.
We stand together and can make a difference not just in research for the DIPG cure, but also for the quality of life for the children and families that have to wake up every day and deal with the realization that we do not know what tomorrow brings.
HELP ME, HELP CHAI LIFELINES KIDS!
Thank you so much for supporting me and helping Chai Lifeline continue their incredible involvement.
Nicole Bitton Benzekri