Matters of Faith Gabe's Story - ABC 33/40 - Birmingham News, Weather, Sports

Matters of Faith Gabe's Story

Matters of Faith Gabe's Story

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SHELBY COUNTY - AL -     Parents are fighting to save their son....
Gabe Griffin has duchene ... his muscles break down... but they don't have the protein to rebuild them.
   The family is racing against time to get a drug approved that could save him.
 
  Gabe and his twin sister  just turned 9 .... the Griffin family is celebrating with a game in the back yard.


 Gabe looks like a normal healthy little boy.... but he has been diagnosed with a rare condition.

Scott Griffin is Gabe's dad.
 He says, "He has a disease called duchene its a muscular disorder. Although he
runs and plays... his muscles are deteriorating on the inside. There's not a
treatment and not a cure. His prognosis: at 12 he is expected to be in a wheelchair. Then at 19 or 20 his
journey will be over."


But there is hope.... it's a drug called apperson.
It has no known side effects, but got denied approval.
 It's the only hope this family has to keep Gabe healthy.
So the griffins organized a petition to get the drug back on the table to get approved.


Scott says, "I am trying to save my son. We have been going to D.C. And in a letter writing campaign not only to get
this drug in the hands of Gabe but the other children that could benefit.
 15,000 other children in the U.S. Have duchene.
 We had to get a hundred thousand signatures in 30 days... for
Obama to have to officially respond."

  They got the needed signatures and are awaiting a response.
While in D.C. the Griffins tried to meet with many lawmakers... made a new friend in Congressman Bachus' office.


 Michael Staley/Congressman Bachus Chief of Staff.  "I'm standing in the doorway this little red headed kid comes up to me and says are
you Spencer Bachus? I said no but come on in.
 I instantly fell in love with the family, when you see a dad willing to
put everything on the line to save his son it touches your heart."

 Michael Staley is going to ride across the country to bring attention to  this condition... and raise money to fight it.

 Scott, "God puts people in your lives for a reason.
 right now i'm trying to save my son."

Michael says, "This is a time of my life I want to give back,  to take a message across
country is not a sacrifice compared to what Scott and Tracy do for Gabe.
 We are gonna ride June 28 we are gonna go from astoria oregon and
ride across the country..once we get past iowa...head south... end the ride in
mobile."
 
Scott, "As a parent you pray everyday you are not in this situation and you
pray everyday you are not. But we're here we can either hide our head in
stand or fight.
  One day I'm gonna have to
tell him that he's dying.
 I pray every night that day doesn't come. I do believe with  apperson
we have a chance."


 Here's how you can help.... they are asking for help in using an rv and camping equipment for the trek.
and the hope for  gabe team is looking for a volunteer who can help with marketing along the way.
 also you can donate money to help fight duchenne,  go to www.hopeforgabe.org
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