Mid-South boy's fight helps muscular dystrophy drug get approval - WMC Action News 5 - Memphis, Tennessee

Mid-South boy's fight helps muscular dystrophy drug get approval

Dalton Al-Chokhachi (SOURCE: WMC Action News 5) Dalton Al-Chokhachi (SOURCE: WMC Action News 5)

A Mid-South boy is fighting a deadly form of muscular dystrophy that has taken his ability to walk and will eventually take his life.

That didn't keep Dalton Al-Chokhachi and his family from fighting in Washington D.C. to help save the lives of other boys like him.

Now, the family has learned they haven't just fought--they've won.

The drug they went to Washington D.C. to encourage the FDA to approve finally received the much needed approval Monday.

"If we could protect any young man or family from ever having to feel the heartbreak we had to endure we will do that," Dalton's mother, Stacie Al-Chokhachi, said.

Dalton has Duchenne muscular dystrophy. It's a disease that typically takes away the ability to walk by the age of 12. Most patients also have heart or respiratory failure in their 20s. 

Dalton can no longer walk. 

This new drug, eteplirsen, is used to treat the disease.

"Getting any type of treatment approved for a rare disease is a miracle," Stacie said.

Dalton's mother said while the disease is fatal, there is a hope that this new drug could possibly add years and, more importantly, increase the quality of life for those suffering from the disease.

She said 12 boys have already been taking the drug for four years and they have seen a dramatic change.

"We're not living in a bubble where we think everything is going to be easy, but regardless, our voice has been heard," Stacie said.

She said the drug alone will not benefit Dalton, but if it is combined with another drug, there is a possibility that it could help. It's something the family hopes to try in the future.

"If I can get the 'cocktail,' like you like to call it, that would be good," Dalton said.

But, most importantly, they said getting this approved is a step towards more research into the disease and more drug companies coming out with help in the future.

"Thank you my friends," Dalton said.

Copyright 2016 WMC Action News 5. All rights reserved.

Powered by Frankly