Thousands 'race to yes' in fight for 9-year-old with muscular dy - KAIT-Jonesboro, AR-News, weather, sports

Thousands 'race to yes' in fight for 9-year-old with muscular dystrophy

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Stacie and David Al-Chokhachi's 9-year-old son Dalton was diagnosed with Duchenne's Muscular Dystrophy when he was 6 years old. Stacie and David Al-Chokhachi's 9-year-old son Dalton was diagnosed with Duchenne's Muscular Dystrophy when he was 6 years old.
The 9-year-old loves the family pig, Penelope. The 9-year-old loves the family pig, Penelope.
A drug being used in a pilot study of 12 boys shows great promise. A drug being used in a pilot study of 12 boys shows great promise.
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(WMC-TV) - A Mid-South family's fight to save their young child's life led to a petition with thousands of signatures supporting the approval of a drug.

"Our children are going to die if they don't get it. It should be our choice," said mother Stacie Al-Chokhachi.

Stacie and David Al-Chokhachi's 9-year-old son Dalton was diagnosed with Duchenne's Muscular Dystrophy when he was 6 years old. He used to be able to stand, and he could walk; now he uses a wheelchair.

"With this drug our boys can be the first generation to live instead of the last to die," said David.

Duchennes—a genetic disease that almost always affects boys—moves quickly causing rapid deterioration of the muscles and death usually by the age 20.

A drug being used in a pilot study of 12 boys shows great promise.

"We've seen videos of the boys being able to do things at the age of 12 where they're completely confined to a wheel chair at that point running, walking, skating, climbing," said Stacie.

The Al-Chokachis want that for Dalton, who had to leave school and is being home schooled.

The 9-year-old loves the family pig, Penelope.

"My friend Charlie was like you have a pig," he said. "I was like don't judge, Charlie."

The Al-Chokhachi's and other families with boys who have DMD want the drug fast tracked by the FDA who has been studying it for two and a half years. The campaign is call The Race to Yes. They need 100,000 signatures on a petition by March 29 for any hope of that happening.

"We don't know what this disease could do to him by next year," said David.

Read the petition here: https://petitions.whitehouse.gov/petition/urge-fda-say-yes-accelerated-approval-safe-effective-therapies-children-duchenne/qtRww0rN.

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