(Memphis) A Cordova couple has joined a national campaign to get the FDA to fast track a drug that could save their son’s life.
Today, the 9-year-old has to get around in a wheelchair.
They say researchers now have a drug that can stop the disease in its tracks and they can’t understand why the FDA has not approved it yet.
“The FDA has the possibility to make this the first generation of boys to live and not the last generation to die,” said David Al-Chokhachi.
Duchenne Muscular Dystrophy is a progressive muscle-wasting disease, that usually only affects boys, and can lead to death by the age of twenty.
Those with disease don’t produce a crucial protein called dystrophin.
For two and half years, researchers have been treating 12 boys with the experimental drug called eteplirsen.
The drug can produce dystrophin.
So far, the boys in the study have either stabilized or gotten better.
The Al-Chokhachi’s say that is unheard of with Duchenne.
“Here’s the deal we have this drug that’s been tested for two and a half years with no negative side effects and as Duchenne parents we are saying why doesn’t the FDA let this thing go. I mean, if they don’t let it go who knows where Dalton will be a year from now or where any of the boys will be a year from now,” said David.
Duchenne parents across the country have started an online petition to force the White House to get involved.
They need 100,000 signatures by March 29.
“We have the opportunity to have it accelerated and approved, which means we would get it in our hands and our boys would be able to get it,” said Stacie Al-Chokhachi.
The Al-Chokhachi’s say as the parents of a child with a terminal illness, they should have the right to decide if he gets this drug.
They say kids with Duchenne have nothing to lose.
To sign the petition, click here.