Remarkable Women: Mother's fight for son's 'right to try' inspires Hoosiers

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INDIANAPOLIS, Ind. — Life was normal for Laura McLinn, her husband and five children—but everything changed in 2013.

“Jordan was almost four when he was diagnosed with Duchenne muscular dystrophy. We had no clue. We barely even had ever heard of muscular dystrophy,” she recalled.

Duchenne muscular dystrophy is a rare disease that weakens muscles. The family was at a loss, leaving the doctor’s office with “zero hope” and the belief that their son had a fatal disease. They were told his life expectancy would be about 20 years.

“Here we are with this little boy who’s running around and happy and enjoying life,” she said. “Like, so immediately we sort of went into I guess what you’d call a mourning phase because we had just been told that our son is going to have a very short life, there’s not hope, there are no treatments.”

But the family’s strong faith wouldn’t let them give up. They approached every day as the “best day ever” and strove to live life to the fullest. It started by helping Jordan achieve his dream to become a firefighter.

“Jordan, of course, is a superhero to us, but all of these guys, all of the community that’s just come together, I mean I think they’re all heroes.”

Laura went to work and became a champion of the “right to try” law in Indiana.

“Basically, what that law said was that if there is an experimental treatment that exists and you don’t qualify for a clinical trial and you have no other way to access it, patients should have a right to try it as long as it’s made it through the safety part of the FDA approval process,” Laura explained.

Both she and Jordan testified in support of it. When Indiana’s bill passed, they took their fight to the federal level, enlisting the help of a fellow Hoosier: Vice President Mike Pence.

“He told us, ‘I’ve had multiple conversations with the president and he’s passionate this, I’m passionate about this, we’re going to get this done,’” she remembered.

It worked. President Trump signed the federal “right to try” bill into law in 2018.

The work wasn’t done, though. Laura founded a foundation called “Best Day Ever.”

“What I realized at one point is that my daughters were kind of like taking the back seat, so to speak. And a lot of the experiences included my daughters, but a lot of them didn’t. They were about Jordan,” Laura said.

“And so what inspired me to start the foundation was that I realized that caregivers and siblings, their needs are just as great as the patient that’s diagnosed. Their needs are just different.”

Laura’s fight inspired Linda Buckley, who nominated her as a “Remarkable Woman.”

“I saw Laura and Jordan walking towards the gym. And I thought, I knew he’s not supposed to do stairs for his disease. I thought, how’s that gonna work? And she just bent down and Jordan hopped up on her back. She carried him up the stairs and I thought, yeah, I can be, I can be better right now because I saw that Laura just does what needs to be done. And her organization is not just for her Jordan, but for all our kids.”

Laura is humbled by the nomination.

“I don’t really even know what to say about it. It’s, it’s an honor and I feel very grateful,” she said.

She’s committed to making every day the best day for her family and others.

“One of the things that my husband and I always say is, um, we never ask, ‘Why did God do this to us?’ Why did God do this to Jordan? Or why did this happen to us? Instead we just say, ‘Why not us?’ I mean, because it has really changed our lives in a very positive way. So I think just taking that approach and just thinking, ‘How can I make every day the best day ever?’”

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