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The little boy behind Indiana's "right to try" bill

March 25, 2015

Adriana Diaz Reports

Originally published in CBS This Morning

“I just said, ‘Hey I’m going to make him a resume. I’m going to get him a job,'” McLinn said.

Laura sent his resume to local fire departments and posted it to Facebook, reports CBS News correspondent Adriana Diaz.

Job offers and memorabilia started pouring in from fire houses coast to coast, including New Jersey, Minnesota and Washington state.

“Christmas morning, he had a couple of job offers in his stocking,” McLinn said.

Jordan has Duchenne muscular dystrophy, or DMD, a muscle weakening disorder. It is fatal. Kids born with DMD are often wheelchair-bound by age 12, with a life expectancy of just 25 years. In December, he became an honorary member of two Indiana fire departments.

His favorite part of the job? The juice.

“He just goes and they make him Kool Aid, and we just sit at the table and we talk. It’s like a family,” McLinn said.

“I just eat lunch and I work out,” Jordan said.

Jordan is the face of Indiana’s “right to try” bill, which gives the terminally ill access to experimental drugs that are not FDA approved. He was front and center on Tuesday at the state capitol, even delivering the pen to Indiana Gov. Mike Pence, who signed the bill after it passed unanimously in the state legislature.

“It was deeply inspiring to me and just a whole lot of fun!” Pence said.

Indiana joins eight other states which all enacted “right to try” legislation in 2014 and 2015.

“This law applies to people that are dying. That’s the bottom line,” McLinn said.

There are no approved therapies for Jordan’s condition, but his mother says a drug in development has had promising preliminary results in cases similar to his.

“He’s still going to have muscle weakness, he’s not going to be in the NFL — that’s ok — but he’s going to have a longer life,” McLinn said.

In a statement to CBS News, the FDA said, in part, it believes “the drug approval process represents the best way to assure the development of and access to safe and effective new medicines for all patients.”

“My dream is for my son to change the world… and that’s what ‘right to try’ I think is going to do for Jordan,” McLinn said.

Dad Jeff McLinn said he wants his son to reach his dreams and hopes.

“I want him to have that opportunity to grow up,” Jeff said, in tears.



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