LOS ANGELES (CBSLA.com) — Carter Sarkar is in many ways a regular 4-year-old boy. He enjoys playing with his older sister, laughing and, of course, family trips to Disneyland.
But Carter is locked in a battle with a rare and fatal disease, Sanfilippo syndrome, that has no known cure. Within years, it will sap him of his memory and ability to function, doctors say.
In response, his family is making the most of every moment.
“We came up with a slogan for Carter, which is, ‘Live today, hope for tomorrow,’ ” said Jennifer Sarkar, his mother. “I think that’s how we really try to live our lives, where we just live it to the fullest today.”
There are still many reminders of the struggles and tough times ahead.
“How do you tell a 6-year old that your brother won’t be able to say your name in a year?” Jennifer Sarkar asked. “How do you tell her that all these memories and all these games that they like to play, he won’t be able to play anymore?”
Sanfilippo syndrome occurs in children lacking an enzyme to break down molecules used in building connective tissue. Those molecules, which would ordinarily be discarded once they are no longer needed, are instead stored in cells. That storage causes progressive damage, according to the Team Sanfilppo Foundation.
“Because you can’t break that down, it causes dysfunction throughout the body,” said Steven Kim, Carter’s doctor.
Life expectancy for those with the disease is 10-20 years.
“Usually around the time that they’re five, they’ll lose their speech and language,” Jennifer Sarkar said. ” And they will be wheelchair-bound until they pass away in their mid to late teens, usually.”
The Sarkars received Carter’s diagnosis just six months ago. They received the news by phone after a family trip to Disneyworld in Florida.
“I wanted to just throw my phone across the airport, curl into a ball and cry,” Jennifer Sarkar said on a website that aims to raise awareness about Sanfilippo syndrome. “How could our sweet, funny, loving, vivacious little boy have this horrible disease? How is there no cure and nothing we can do to help him?!”
Although it was easy to fall into despair, the family has more recently strengthened their resolve to spend more quality time together.
“We’ve made a bucket list for him, of things we want him to experience,” said Samir Sarkar, Carter’s father.
Those activities include trips to Disneyland, and even a family camping trip.
Carter’s parents are also keeping their faith that one day doctors will develop a cure for Sanfilippo Syndrome.
“I definitely feel that’s there’s a light at the end of the tunnel, and I feel that as any parent who has a sick child, that’s what you go by everyday,” Jennifer Sarkar said. “Every day, you wake up trying to make that light brighter.”
Carter’s family is raising money to increase awareness of the syndrome with a campaign called Splash 4 Life.