FDA pays attention to 9-year-old's petition

DENVER - Ryan Dunne is a 9-year-old boy who has Duchenne Muscular Dystrophy. It is a terminal disease that affect one in 3,500 boys born in the U.S.

Over the years, Ryan's muscles have become weaker. He used to love taking taekwando classes with his father. Now, his father Chris has to pick up Ryan when it is too hard for him to move.

Ryan will eventually need a wheelchair. As the DMD progresses, Ryan is expected to face lung and heart troubles which could end his life.

His parents are doing everything they can to make Ryan feel comfortable. They have flown him back and forth to California to take part in a clinical trial. The treatments helped for a while. Now, Jennifer and Chris Dunne hoped the Food and Drug Administration would approve another drug to help their son and other boys with DMD.

"For the first time, there is a medicine that can stop the progression of DMD," Chris Dunne said. "We know this because off of the boys who were treated with this medicine showed improvement without any harmful side effects."

The Dunnes set up a petition on the White House website. It needed 100,000 signatures by Saturday, March 29.

The petition states: "It's time for the FDA to 'say yes' and make this the first generation of Duchenne survivors."

As of April 22, the Dunne family celebrated a victory. The FDA may grant accelerated approval for a drug show to improve the lives of boys suffering from DMD. Sarepta Therapeutics also announced plans for a drug trial that will allow Ryan and other boys access to the medicine this year, which is crucial for Ryan.

"This provides the opportunity to get the drug approved and in the hands of all the boys who can benefit from it sometime in 2015," Chris Garabedian, chief executive at Sarepta, said. "I think that's a huge win for the [Duchenne] community."

For the Dunnes, they hope this medication will come fast enough that his generation of boys will be the first to outlive the disease and not the last to die from it.

Ryan is receiving so much support from his friends at Cherry Hills Village Elementary School. In March, there was a rally for him. The Mayor of Cherry Hills Village proclaimed it "Ryan Dunne Day."

"That day alone, we saw a huge bump in the number of people supporting our petition on the White House website," Chris Dunne said.

Ryan realizes he could be in store for more shots, but he says he's ok with that. He doesn't fully realize the challenges in his future.

He is a 9-year-old-boy trying to keep up with his friends at school and his two brothers.

To see the "Help Ryan Dunne" petition: http://1.usa.gov/1kyzQAE.

To learn more about Duchenne Muscular Dystrophy: http://bit.ly/1qVCul5.

(KUSA-TV © 2014 Multimedia Holdings Corporation)


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