Skip to comments.My Two Sons
Posted on 12/30/2012 9:19:31 AM PST by null and void
Both of my sons have the same debilitating disease -- Duchenne Muscular Dystrophy -- that's kept them dependent on wheelchairs to get around. But now only one of my sons has access to a "miracle drug" that is saving his life.
Max was fortunate enough to take part in a study of a breakthrough medication, and now he can walk on his own for longer than he ever could. But Austin wasn't as lucky.
Without access to this miracle drug, I watch Austin suffer silently as his brother thrives. The FDA has the power to make this drug available to kids like Austin by putting it through the "accelerated approval" program. It could otherwise take years for this important drug to be available to kids like Austin, denying him the same chance as his brother at a better and longer life.
I started a petition on Change.org asking the FDA to accelerate the approval of Eteplirsen, Max's miracle drug, so both of my sons can have a chance at stopping the crippling effects of Duchenne Muscular Dystrophy. Please sign my petition here.
Duchenne's is a disease that causes loss of muscle, to the point where children stop walking and eventually cannot breathe on their own. It is a slow death sentence with no effective treatment available. Watching Max make progress with this medication has been nothing short of a miracle, but bittersweet -- Austin grows steadily weaker with each passing day.
Eteplirsen has helped one of my sons accomplish what I never believed possible. And this year, a law was passed that allows the Food and Drug Administration (FDA) to expedite the approval of experimental medications that have been proven to work.
The company that produces Eteplirsen is going to officially ask the FDA soon for accelerated approval because of its miraculous trial results. I am doing everything I can to make sure the FDA knows how crucial this drug is to the survival of my sons. But they need to know that the public supports an accelerated approval process too -- and since they have the power to act, your signature will add the pressure they need to move quickly.
Click here to sign my petition asking the Food and Drug Administration to place Eteplirsen, a miracle medication for children with Duchenne Muscular Dystrophy, on accelerated approval so that my son Austin and other children who need this life-changing drug can have access to it.
Thank you for your help.
Mother of Max and Austin
Saxtons River, Vermont
Please consider FReeping the FDA on this one.
Here's a picture of her kids:
Try to get it in Canada, Germany, Switzerland, or England. Try foreign countries. Good Luck.
I expect she will.
OK. Signed petition and bump this thread.
In at 75,855 . . .