"He looks so normal today but between the ages of ten and twelve he’s going to be in a wheelchair and 17 to 20 he’s going to die. Those are facts.
- Gabe's Father Scott Griffin
CASPER, WY - A small group of cyclists are bringing attention to a young boy suffering from a terminal disease.
Nine year old Gabe Griffin suffers from Duchenne and as the group travels from Washington to Alabama they hope to bring people together for Gabe as well as get the drugs he could use.
"Whenever a child is becoming an adult and getting to be in their peak athletic ability, Duchenne children are dying," said Michael S¬¬¬taley
Gabe has been told of his disease, but he doesn't know it will kill him.
"He looks so normal today but between the ages of ten and twelve he’s going to be in a wheelchair and 17 to 20 he’s going to die. Those are facts. Another fact is there is a drug that could save his life called eteplirsem," said Gabe's Father Scott Griffin.
The family hopes to have the experimental drug fast-tracked so Gabe can have a chance at a longer life.
"This drug could not only prolong his life but it's shown to that it can stop the progression of the disease,” said Griffin. “If he's still walking when he gets it, he will continue to walk. Once he's in a wheelchair it won’t give him the ability to walk back."
Many Casper residents are doing all they can to support the family.
"We found out what Gabe's story was and we found that it was heart-wrenching, that there wasn't a way to save their child. For that purpose, we decided we wanted to get behind them," said a family friend Kim Kelbert.
One cyclist has been close to this disease before and it really hits home.
"Then he tells me he's riding money for Duchenne, muscular dystrophy research and to raise awareness. It was just crazy because, this past December we lost a close family friend to the disease," said Cyclist¬ Wes Bates.
Gabe's family is not only in a fight for a drug, but a fight against time.
"One day, he doesn’t know he has a terminal disease, and one day I'm going to have to tell him,” said Griffin. “He just thinks he has weak muscles. And one day I’m going to have to tell him he is dying. Or he's going to come and ask me. And I pray every night that that day never comes."
Gabe is not traveling with his father at this time but will fly to meet him later on in the journey and Mr. Griffin says he misses his son very much.
The disease affects one in every 3,500 boys born and is the number one genetic killer of all boys in the world.
If you would like to learn more or contribute to the Griffins visit the link above.