Samir Sarkar embraces his son Carter at a Charity event set up for Carter/ Skylar Barti The Signal

Community shows support for local child with rare disorder

With volunteers dressed as Elsa from Disney’s “Frozen” and stormtroopers from “Star Wars,” along with kids playing tambourines with a live band, Route 66 Classic Grill brought together a community with fun and smiles to help a boy diagnosed with a rare disorder.

With volunteers dressed as Elsa from Disney’s “Frozen” and stormtroopers from “Star Wars,” along with kids playing tambourines with a live band, Route 66 Classic Grill brought together a community with fun and smiles to help a boy diagnosed with a rare disorder.

Carter Sarkar, 6, was diagnosed with the rare degenerative disorder Sanfilippo. The genetic disorder causes children, on average, to lose their speech around the age of 5 before losing their hearing and ability to walk, developing muscle pains, experiencing seizures and then, ultimately, dying in their mid- to late-teens, according to his mother, Jennifer Sarkar.

Carter’s former preschool teacher and family friend Monika Rasaei helped set up the event at Route 66 in about a month after the family’s GoFundMe page went live. Over 55 donors sent in items that went up for silent auction with items ranging from IHOP gift cards to Magic Mountain tickets, Rasaei said.

“This is all our community coming together,” Rasaei said. “When the Sarkar family came out with the video, we had this idea to set up an event to help somehow. We had never done something like this before. We reached out to mom Facebook groups and had all these people that came forward to help.”

Money raised from the event went directly to helping the Sarkar family reach their $1 million goal that will go directly to the Cure Sanfilippo Foundation that is funding an enzyme replacement therapy that could give Carter the chance to live a full life.

Members of the 501st Legion gathered at Route 66 to meet Carter Sarkar and other kids during a chartiy event at Route 66 Classic Grill/Skylar Barti The Signal

“It means the world to us that everyone is taking time out of their very busy days to help us out. It means the world,” said Carter’s father Samir Sarkar. “Every day is tough. Every day is not like this. He goes through a lot of different regressions. I feel like for us personally we try to focus on the positive.”

The positives include the $743,000 raised so far through their donation page.

“As a parent, he looks just fine, but you know he’s not,” Samir said. “And you know, unfortunately, he’s dying little by little. It breaks our heart every day. But we push through it, and we make sure that we stay positive. He should have the opportunity to live a full life, or live longer than this disease would let him.”

Sixteen children have died as a result of Sanfilippo this year, according to Samir. It is through trials like that of the Cure Sanfilippo Foundation that he hopes to no longer lose any more “unicorns” as he calls them.

“My wife is amazing in so many different ways. She came up with this campaign,” Samir said. “What we started noticing was it’s very difficult to approach people with devastating news. So, she came up with the mascot and the slogan, ‘Save the Unicorn.’”

The original donation campaign has been extended until June 30 to help ensure that the Sarkars hit their $1 million goal. Rasaei hopes to push the meter further by raising at least $10,000 with the Route 66 event.

Those who wish to support the family can still donate at www.savingcarter.com until the end of the month.

“These are amazing children, who are magical and deserve a chance at life,” Samir said. “When you meet them they’re beautiful and just so funny. The fact that their light gets turned off quickly is not OK.”

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