SANTA CLARITA, Calif. (KABC) -- The clock is ticking for 6-year-old Carter Sarkar, who was diagnosed with Sanfillipo syndrome three years ago.
Most children with the rare genetic disease -- caused by an enzyme deficiency and without a cure - don't live beyond their teenage years.
The symptoms are similar to those afflicting patients with Alzheimer's, including losing the ability to walk, talk, eat and swallow.
"We were floored, like devastated that this disease exists and that parents are out there dealing with it and that children are dealing with it," Samir Sarkar, Carter's father, said. "Then when we found out that we were going to be those parents, it was unbelievable."
But Carter's parents aren't giving up hope even though their son was rejected from current clinical trials that appear promising because of his age. They are now determined to help fund new medical research that would specifically assist older children with Sanfilippo.
Working with the Cure Sanfilippo Foundation, the Sarkars have set up a GoFundMe page to share Carter's story. They've raised $651,000 of a $1 million goal with two days left to reach it.
Their efforts have grabbed the attention of some major Hollywood stars such as musical artists Madonna, Cher and Meghan Trainor, along with actor Jennifer Garner.
"If around 17,000 people donate $20, we'll reach our goal and it'll be amazing," Samir Sarkar explained.
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