Miracle Drug Begins to Save One of Two Brothers
Austin Leclaire, age 14, and Max Leclaire, age 11 have a lot in common. They both have braces, sandy brown hair, big smiles, and they share the same parents. There is one thing in particular that the boys share that is the result of both devastation and hope for their mother. The brothers were both born with severe cases of duchenne muscular dystrophy.
Put simply, muscular dystrophy (MD) is a genetic disorder that weakens the muscles that help the body move. The disease takes a toll on the muscles over time, preventing the people or children who have it from doing everyday activities like walking, sitting up, or eating.
An experimental miracle drug called eteplirsen has been introduced to the Leclaire family that is supposed to improve the symptoms that come from having muscular dystrophy. Unfortunately, only Max qualified to begin taking the drug.
Max has been improving rapidly and is able to participate in activities that he had previously never been able to be a part of. He even joined a soccer team.
Meanwhile, Austin must watch from the sidelines in his wheelchair as his health slowly deteriorates.
When asked how he feels about the situation, Austin said, “It’s really hard because I know I’m getting worse and he’s getting better.”
The mother of the two boys, Jenn McNary, said the following about their experience, “We were pretty naïve. As soon as we knew the drug was working, we thought that it would be super-easy to just talk the company into giving Austin the drug. But it became painfully apparent very quickly that this was not going to happen for a number of reasons.”
That was when she decided to spring into action.
Generally, the FDA takes years to put a drug through the approval process before it becomes ready to be prescribed. Since Max’s improvement his mother has started a campaign to get the FDA to accelerate the process of approving the drug.
On McNary’s website it says, “Stand up and tell our representatives, senators and the FDA that these boys have suffered long enough. This drug works and it is safe!”
The FDA isn’t turning a blind eye to McNary and her boys. According to The Wall Street Journal, the Food and Drug Administration has announced that they will consider the accelerated approval for eteplirsen after conducting a further review of additional data.
McNary doesn’t go a day without putting effort into her goal to get the drug approved quickly. “The idea is to save this generation of kids, not to save the kids that aren’t born yet,” she said, “And the idea is to do it as fast as humanly possible so they don’t lose another single function or we lose another single kid.”
McNary said it breaks her heart to watch one son improving and the other suffering. Her petition to the FDA reads “approve the medicine my boys need to survive — both my sons deserve to live.”
What would you do? How would you handle it if two of your children had a deadly disease and you could only cure one? How would you take action? Comment below!