Friends, family rally for terminally ill boy to get experimental medicine

DENVER — Lawmakers move forward a bill with a goal of saving the lives of the terminally ill, including a 9-year-old boy from Englewood.

The bill allows terminally ill patients to have access to experimental medicine not yet approved by the Food and Drug Administration (FDA).

Students stand with 9-year-old Ryan Dunne asking for help to save his life outside Cherry Hills Village Elementary Tuesday at 4:30 p.m.

Duchenne Muscular Dystrophy will eventually prevent him from standing on his own.

“Kids are generally in a wheelchair by their early teens, quads by their mid- to late-teens and don’t survive past early adulthood,” says Ryan’s dad, Chris.

But there’s investigational medicine giving Ryan’s family hope.

“The key is they have to get the treatment early. The longer they go without treatment the more the effects of the disease become apparent,” says Chris.

But Ryan can’t get that treatment of Etetlirsen for several years until the FDA approves it. It’s time Ryan doesn’t have.

LINK: Petition to help Ryan Dunne

“If we have to wait that long, Ryan would not be walking anymore. There will be kids in wheelchairs that will be dead,” says Chris.

Already, the boy can’t play the sports he loves. The disease is taking its toll.

“Sixteen months ago, Ryan was walking up and down stairs. Now I have to carry him. Sixteen months ago, he could ride the school bus to school. Now, he can’t get up the stairs in the school bus, so he doesn’t ride the bus,” says Chris.

State lawmakers are trying to help.

A bill would allow the terminally ill to use investigational medicine approved by the FDA.

But Colorado alone couldn’t force a federal agency to do anything.

“If states start coming on board and send a message to the FDA, ‘maybe you need to change the way we run drugs through our approval process,’” says Rep. Joann Ginal of Fort Collins.

The proposal makes participation by the pharmaceutical companies voluntary. It will be heard by the full House next week.

But Ryan’s family isn’t waiting around.

With 100,000 signatures on a White House online petition, it could pressure the White House to pressure the FDA to accelerate its drug approval process.

“We are at the point now, Ryan could be one of the last kids to die from this disease or one of the first kids to survive it,” says Chris.

The public may be on Ryan’s side, but time is not.

“We don’t have time. Every day that goes by, my son gets weaker,” says Chris.

By Tuesday evening, the Dunne’s petition had reached its goal of 100,000 signatures,  four days before the deadline. You can still sign it if you want to show your support.