4-year old Carter Sarkar with his father Samir Sarkar.

Castaic family of son with rare disorder raising money for clinical trial

Just like any normal 6-year-old boy, Carter Sarkar, a young boy living in Castaic, loves to play “pirates,” climb on jungle gyms at the park, read the “Brown Bear” books and sing and play with his sister Sophia.

But unlike normal 6-year-old boys, Carter has a life-threatening disease called Sanfilippo syndrome. The genetic disorder causes children, on average, to lose their speech around age 5 before losing their hearing, their ability to walk, developing muscle pains, experiencing seizures and then ultimately passing away in their mid-to late-teens, according to his mother, Jennifer Sarkar.

Carter has the most severe type of strain, Type A. There is currently no known cure for Sanfilippo syndrome.

 

The family is currently raising money at their GoFundMe page, www.SavingCarter.com. They have one month to raise $1 million to fund a clinical trial that could possibly save Carter’s life.

As Carter turned 6 this past week, he is now on the age cusp where the disease can take over at any minute, Jennifer Sarkar said.

For his 5th birthday, Carter and his community hosted a special ‘Halloween in May’ event so Carter could trick or treat in celebration.

“The best and easiest way to describe it is children’s Alzheimer’s disease,” she said. “While he looks like he’s fine, he is not.”

Carter isn’t visibly regressing yet, but the family has started to notice symptoms, like frequent falls, scattered attention span and behavioral changes.

Sanfilippo syndrome is a metabolism disorder where the body does not make the proper enzymes to break down sugar molecules, leading to the deterioration.

About 1-in-70,000 children could have the disease, Sarkar said.

The Sarkar family is asking for donations or support of any kind.

“If someone can’t donate, we want people to share his story,” Sarkar said. “By sharing, you are helping not only save his life, but potentially save so many other children’s lives, as well.”

 

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