Can You Help This Kid?

[Bill W]

Ryan has a rare disease and need your help.  Time is growing short. 

 

http://www.helpryandunne.com/ 

[Trebs]

Couldn't get the to posted link, but looked around (to make sure it was legit).  Here is a news article that ran locally where he lives:

 

 

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 are hoping the Food and Drug Administration will 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 needs 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."

Ryan is receiving so much support from his friends at Cherry Hills Village Elementary School. On Tuesday, 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.

Even if their goal is met, there is no assurance President Barack Obama will side with them and request the FDA to provide more effective therapies for those with DMD. The Dunnes are hoping for the best.

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.

[sandrewn]

I am not an American, but I think any one can sign this petition. Some people are afraid of giving blood, I do (and we don't get paid for doing so). This boy in all likely hood does not have long to live. If there is any chance that my signature can make a difference and help him and others with similar afflictions, how can I not do so and look myself in the mirror. In the time it took you to read this, you could of signed up like I did and given your signature. Over 56,000 have signed already, the goal is 100,000 or more. We only have till 29 March to sign on. You are important! We can make a difference.

 

Thank you

Sandrewn

[hh5]

doesn't jerry lewis foundation help out?

[Trebs]

They can't bypass the FDA regulations which I gather from the article currently do not allow doctors to use the specific drug for his specific diagnosis.  It's not a money thing, it's a regulation thing

[Kitt]

The way things are right now DMD is basically a death sentence. If this drug has shown no harmful side effects yet, the FDA may be needlessly delaying treatment that could make a huge difference. They tend to error to the side of caution because so many meds don't show their real dangers for years after approval. (The diet drug that caused heart damage years later comes to mind.) But if the children who suffer from DMD don't have the years for the additional trials, which may not show the ultimate dangers anyway, what is the point? Perhaps if the petition gets denied the parents can get the boy enrolled in one of the clinical trials?

[Bill W]

They can't bypass the FDA regulations which I gather from the article currently do not allow doctors to use the specific drug for his specific diagnosis.  It's not a money thing, it's a regulation thing

 

Yes, it is a regulation thing.  The petition is to help change the regulation.  

[DynoReads]

there are extra characters at the end of the link Bill posted. Try this http://www.helpryandunne.com/

[Sasha Distan]

My friend has DMD. It blows. I feel incredibly sorry for this kid, but more sorry for his family. To lose a children is an awful and indescribable thing, but to know you're going to lose them, a period of odd mourning which goes on for years, I think is so much worse.

[Cris L]

A friend of mine has had his 3 sons diagnosed with this. Their youngest a girl was born, and is going to see all her big bothers die, before she is even a teenager!

 

Their oldest is about 10 now. First boys born in the family in about 3 generations, so they had no clue!

[Zombie]

signed it - dunno if it'll count, being an alien an' all

anyway, the count is now 103,718

[Phantom]

I just signed it even though it passed the threshold of garnering a response... I'm Signature # 104,125!!!!