Carter is a normal kid. He enjoys romping along the sandy beach, discovering lizards in his backyard and playing tag in the park.

But amidst all the summer fun, 4-year old Carter is fighting — a rare genetic disorder, found in only 1-in-70,000 children.

Carter, who lives in Castaic with his mom, dad and sister, is currently fighting Sanfilippo disease—a rare, uncured autosomal disease most commonly found in young children.

“(Sanfilippo) takes away their speech and language (abilities) usually around age 5. (There’s a) chance of hearing loss, chance of seizures and loss of all independence and mobility. He will be wheelchair-bound. His organs will (eventually) fail and he will likely pass away by his mid-teens,” said Carter’s mother, Jennifer Sarkar.

In May 2016, Carter was officially diagnosed with Sanfilippo disease, Type A, the fastest and most severe form of the disease.

Sanfilippo disease inhibits children’s bodies from properly metabolizing and breaking down long chains of sugar molecules.

The syndrome is known to cause behavioral problems, stiff joints, and growing dementia as the child becomes older.

Scientists are close to a cure and are currently conducting medical trials, according to Sarkar.

“(We need to) find the cure for the children of today, so they are not forgotten tomorrow,” Sarkar said.

Despite the horrors of the rare disease, the Sarkar family is motivated to assist in the effort to find a cure.

The family has founded “Carter’s Challenge,” a group that works in conjunction with other Sanfilippo nonprofit organizations. “Carter’s Challenge” is dedicated to sharing Carter’s story and raising funds to advance the cure of Sanfilippo disease.

Partnered with the “Cure Sanfilippo Foundation,”  the family hopes to start a national awareness campaign to raise $5 million for the Sanfilippo disease research.

To spark the national movement, the Sarkar family invented “Splash for Life,” a game inspired by the ALS Ice Bucket Challenge. Two players shoot a ball into a cup and the losing player gets splashed by their opponent.  

“We created this challenge to help raise money and awareness for this rare and fatal disease in children,” says the #Splash4Life GoFundMe Page.  All donations are tax-deductible.

The family encourages people to play the fun, water game and donate to the cause.

The Sarkar’s relentless optimism and desire to share Carter’s story is a tragic inspiration to everyone.

“Surprisingly, we feel like Sanfilippo has strengthened our family. We are making sure we do more dinners with our whole family, movie and game nights, and to just spend more time together in general,” Sarkar said in a website post.

To contribute to “Carter’s Challenge” and the fight against Sanfilippo disease, donate here.
Carter’s brave story can be also be found on the “Carter’s” Challenge Facebook Page.

Story Update, Aug. 5:

Carter’s Challenge received nearly $11,000 in donations, largely in part to a contribution from Viveca Paulin, wife of comedic actor Will Ferrell.

Paulin donated $10,000 to Carter’s Challenge, a nonprofit partner of the Cure Sanfilippo Foundation, according to the “Splash 4 Life” GoFundMe site. Paulin’s $10,000 donation to Carter’s Challenge was given shortly after a video was posted about Carter’s story.  
Paulin is a Swedish actress and active member of the Los Angeles art community.

“(We need to) find the cure for the children of today,” Sarkar said, “so they are not forgotten tomorrow.”