DENVER - A local Colorado boy, Ryan Dunne, is in need of a new drug, a breakthrough that has given his family hope, but it is one that has yet to be approved by the Food and Drug Administration.
His parents said it was taking too long for drug approval and started a "We The People" petition to "Urge the FDA to Say YES to Accelerated Approval for safe, effective therapies for children with Duchenne."
They are hoping to pressure the White House to allow the 9-year-old access to the drug soon. Duchenne Muscular Dystrophy is a terminal disease that without treatment, will lead to wheelchair confinement, loss of lung and heart functions and ultimately -- death.
"For the first time there is a medication that can stop the progression of DMD. We know this because all of the boys who were treated with this medicine showed improvement without any harmful side effects. An FDA decision could determine whether these children are part of the last generation to die from Duchenne, or among the first generation to live," said his mother, Jennifer Dunne.
The online petition states: "We urge the Food and Drug Administration (FDA) to use the Accelerated Approval pathway for approval and access to safe, effective therapies for Duchenne Muscular Dystrophy - the leading genetic killer of children that impacts 1 out of every 3,500 boys born in the United States. It's time for the FDA to Say Yes and make this the first generation of Duchenne survivors."
On Tuesday evening, the petition surpassed the 100,000 signature mark. That advances the petition to the White House staff, who will review it, and ensure it is sent to the appropriate policy experts to issue an official response.
"Now there is a real scientific medical alternative that actually works, but we can't get it," said his father, Chris Dunne. "The FDA has all the power in the world to grant accelerated approval and we don't have any more time for them to figure this out."
"I do not want to be considered the last generation of mothers whose child dies from this disease," said Jennifer Dunne. "I want to be considered the first generation of mothers who got their children to live from this drug."
Help Ryan Dunne Facebook page: https://www.facebook.com/pages/Help-Ryan-Dunne/763840733634902