Newly approved drug gives hope to 7-year-old boy with rare deadly disease

Posted at 9:09 PM, Sep 21, 2016
and last updated 2016-09-21 21:09:06-04

INDIANAPOLIS -- Some hope for a 7-year-old boy with a deadly rare disease after a brand new drug was approved by the federal government for clinical trial last week.

Jordan McLinn has Duchenne Muscular Dystrophy, it's the deadliest form of the disease. You may remember when the Indianapolis Fire Department 'hired' him last year. 

But his family says, it's something that he may now be able to beat, all thanks to the controversial decision. 

His mother, Laura McLinn is upfront about the outlook for her son, "... without a miracle of some kind, the life expectancy is around 20... Jordan could be in a wheelchair in a couple of years."

The drug is called Exondys 51 -- and it's the first of it's kind to treat Duchenne Muscular Dystrophy.

Laura, who says she was overcome with happiness when the drug's was passed for trial use on Monday, admits that it isn't a miracle pill. It only slows the progression of the disease. And her son, Jordan, can't even take it, because he has a different variant of DMD. 

"What that means for Jordan is that he will finally be able to enter a clinical trial for the drug that he needs," said Laura.

And that very similar drug, will be more quickly approved. 

It's something this family has been working towards for a long time. You may remember Jordan's testimony to the State Legislature last year for a Right to Try law, which would allow terminally ill people to try medicines not approved by the FDA.

MORE ON JORDAN'S STORY| 5-year-old gets his wish "hired" by IFD | 5-year-old Indy firefighter reports for dutyGov. Pence signs right-to-try bill into law