SoCal family trying to raise $1M for clinical trial to save son with rare genetic disease

FOX 11 / Olympic & Bundy - Carter Sarkar looks like any other happy 6-year-old boy, but he was born with Sanfilippo syndrome -- a rare genetic condition that causes fatal brain damage.

It's often referred to as Alzheimer's disease for children. As degeneration rapidly progresses, Carter's parents Jennifer and Samir say he will eventually lose the ability to talk, swallow and walk. He will develop seizures, suffer severe dementia and eventually pass away.

Approximately one in 70,000 children is born with the condition, which is caused by an enzyme deficiency -- and the life expectancy is 10 to 20 years.

There is currently no treatment or cure available, but Carter's parents are trying to raise $1 million in one month to fund a clinical trial that could give the 6-year-old boy a chance at life.

Jen and Samir joined us on Olympic & Bundy to talk about their sweet 6-year-old son nicknamed "C-Money," what Sanfilippo Syndrome is and what the clinical trial could potentially do.

Listen to the full podcast episode with the Sarkar family here, and watch a previous television report with them above.

If you'd like to help, visit www.savingcarter.com.

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