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“You have a child and all you think about is their future,” Jessica Curran said. “And you think about all the milestones, getting married, going to college, it’s ripped away from you.”

Jessica and Chris Curran are still trying to absorb a devastating diagnosis. Their son, Connor, has Duchenne muscular dystrophy and now they’re dealing with their fear for his future.

“It hit us hard,” Chris said. “It puts you in a wheelchair by age 12.”

“Hearing from doctors, your son has a disease that they don’t have a cure for,” Jessica said. “They don’t live long lives.”

Connor was diagnosed after his twin brother and younger brother were both surpassing him developmentally. Stairs were a problem for him, he had some trouble running and jumping with both fee. It’s all due to muscle weakness caused by the missing protein, Dystrophin. Pat Furlong of the ‘Parent Project Muscular Dystrophy‘ knows the telltale signs all too well.

“When my sons were diagnosed at four and six years old the doctor said, ‘There’s no help and no hope and they’re going to die and in fact they did at 15 and 17’,” Furlong said.

But not without a fight. Raising money first with bake sales and then with lobbyists in D.C. Her wish list got translated into legislation that was passed in February, 15 years ago. Now, there is a research center, standards of care and $500 million investment by the government for new treatment and more.

“We now have 33 companies that are looking at developing drugs that either restore or replace dystrophin, which is the fundamental protein that’s missing,” she said.

Drugs being developed for young boys like Connor. With the disorder, all muscles and especially the heart and lungs lose function over time and eventually stop working. Thus the race for a cure.

“Improve circulation to muscles, improving muscle mass, improving mitochondria, decreasing fibrosis, and decreasing inflammation,” Furlong explained.

And Pat created the organization so o parent ever has to go at it alone.

“Pat has definitely been our inspiration, she lost two sons to this disease and she keeps fighting every day for us and our son Connor,” Chris said.

As Pat and Connor parents and researchers all over the world work for a cure, Connor is on a new drug. And deals with hours and hours of therapy.

“He’s got his determined personality and I think that’s going to get him far,” Jessica smiled. “He won’t take no for an answer.”