Meet Carter! He is the son of LA's favorite Coach Samir and his determined mother, Jen Sarkar. He is your normal four year old little boy who loves sports, digging in the mud, sea creatures, and playing tag with his beloved older sister Sophia. Much unlike most four year olds, however, Carter is dying.

A year ago, Carter was diagnosed with Sanfilippo Syndrome Type A. Sanfilippo syndrome (also known as MPS III) is a rapidly degenerative and terminal disease that affects children. It's often referred to as “Children’s Alzheimer’s”. And it’s as awful as that sounds.

Sometime around five years old, children with Sanfilippo Syndrome will start to lose their speech and language, followed soon thereafter by the loss of their ability to move, causing them to become wheelchair bound, depleting their memories, developing seizures and painful movement disorders.  Most of these children will die in their early to late teens.

Current snapshot: There’s NO cure for this insidious disease.

But there may be hope for other Sanfilippo kids.   A very promising gene therapy treatment trial started last May, the same month of Carter’s diagnosis.   Sadly, what makes Carter’s story even more devastating is that he also suffers from chronic pancreatitis due a rare gene mutation which no one has seen before.  Because the possibility of him having pancreatic attack places the entire trial at risk of being shut down, Carter was denied from the clinical trial, which was a huge disappointment. The further frustration is that he isn’t eligible for a pancreas transplant due to the Sanfilippo diagnosis. They are truly between a rock and a hard place, with no escape hatch.   Amazingly, however, heart-wrenching as this for any parent, Jen and Samir continue to inspire all of us with their brave faces, endless courage and unflagging belief that somehow, this is all for the greater good.

SO WHAT CAN WE ALL DO RIGHT NOW?

Coach Samir and Jen really need help with the piles of medical bills already incurred, as well as the mounting bills looming on the horizon.   The care alone is obviously extraordinarily expensive, but on top of that, they’re losing a lot of time from work due to Carter constantly being hospitalized.  They have also endured that incredible and devastating cruelty of constant denial of treatments and medications coverage by insurance companies.

We're asking you to help ease the burden of the medical bills for this beautiful family and this incredible boy. Each day is a huge challenge for all of them, but on top of watching Carter go through this, they face bigger, long-term worries about what life becomes all too soon with a child in a wheelchair.   If we can alleviate the concerns about affording a wheelchair, a ramp, and a wheelchair access van that’s accessible for his transport, that’s a MAJOR worry off their list, just for starters. 

We’re aiming to raise $100,000, which would help enormously in terms of addressing some of these immediate and costly needs.  Coach Samir is such an incredible person who has touched all of our families and communities.  They need us now, and this is one way we can show them how much we love and appreciate them.   Any amount helps~it’s about the cumulative ripple effect.  Thank you for reading, considering and doanting.

-Melinda Maria Spigel
-Amy Glover
-Kara Corwin
-Lori Gray
-Denise Luiso
-Megan Needleman
-Irene Roth
-Holly Kim