A California community celebrated Halloween in May, all in the name of little Carter Sarkar, who was diagnosed with a rare disease.
The weekend before Carter Sarkar’s fifth birthday, more than 40 neighbors in their Castaic community opened up their homes for Carter and his friends to go trick-or-treating during his Halloween-themed party.
Carter was diagnosed with Sanfilippo syndrome last year. The disease has no cure, and he is expected to start seeing side effects like losing his ability to walk and seizures after he turns 5 years old.
“Carter has been asking to go trick-or-treating for months, he really wants to go, but we tell him, ‘No, sorry, we can’t, it happens once a year,’” his mom, Jen Sarkar, 28, told InsideEdition.com. “So when his birthday came around, his dad and I decided, ‘Let’s do a Halloween-themed party.’”
She said she went door-to-door, handing out flyers about Carter and his diagnosis, and hoping a few homes around the neighborhood would be willing to participate in the day of trick-or-treating.
But by the time the party rolled around, Sarkar said she was getting calls from even more neighbors asking if they could participate. In addition to receiving candy, Carter got birthday presents, hugs, and high fives from the homes he visited.
Last night a few streets in our community lit up with hope and love Halloween style as all he wanted for his 5th birthday was to go Trick or Treating. Happy Birthday Carter!! Please help them reach their goal to help find a cure for Sanfillippo so other children may have a chance to grow. Www.carterchallenge.com #carterchallenge #fundraiser #pleasehelp #halloweeninmay
“Carter loves to say hi and meet people. It was about him, and he was excited to go to each and every house,” Sarkar said. “Everyone had a smile on their face, everyone was enjoying the day. It was a really great birthday for him.”
Sarkar explained her son has been battling chronic pancreatitis due to a rare gene mutation since he was 2 years old. As a result, Carter’s spent nearly 250 days in the hospital.
During one of their visits, a doctor suggested Carter receive a genome test in case he needed a transplant in the future.
That’s when they discovered last May that he also had Sanfilippo syndrome, a rare metabolic disorder that makes it difficult for the body to break down sugar molecules.
Children diagnosed with the rare disease typically only live up to their mid- or late teenage years, and start developing painful side effects as children.
“That was a really hard pill to swallow,” the mom-of-two explained. “Even though we’re a year into diagnosis, it never gets any easier but you have to keep powering forward. You just have to be strong for them.”
Despite the grim diagnosis, Sarkar said her son is still a happy-go-lucky child. She suspected he does not yet understand what his disease means.
“Carter is just a really happy soul,” she said. “He’s taught me so much about strength and courage. You wouldn’t think a young child would be able to teach you, but here he is, teaching us life lessons every day.”
The family now hopes to raise $15,000 toward finding a cure for Sanfilippo syndrome before Carter’s birthday later this week.
To donate to the Cure Sanfilippo Foundation, visit CarterTurns5.com.