Posted: Sep 7, 2013 4:05 PM by Jamie Leary - KBZK News
BOZEMAN - Hemophilia is a rare blood disorder - so rare, in fact, that only about one in every 5,000 boys are born with it and that is why not a lot of people really know what it is.
On Saturday, for the second year, families from across the state are hoping to change that in Bozeman.
Colin Sears is walking for his friend.
"Um Ty...We're walking for hemophilia for him because he has phemophlia..." (sic.) Sears said.
For people who have this rare blood disorder, stopping an open wound from bleeding is very difficult but the kids at this event are strong and the treatment is getting better.
"He could possibly bleed and die so we did a walk that's two miles so that we could help him," Sear said.
Funds raised at the walk will go towards finding even better treatments and cures for bleeding disorders.
"My son's a factor eight deficiency and he's built up an inhibitor to it where normal factor eight does not clot his blood. He has to use a bypassing agent called Fiba," Jerome Hugs, a parent, said.
Jeraco Hugs, Jerome's son, has been managing his hemophilia since he was born so this walk is important to him and his family.
"Because people start learning about it more," he said.
For now, these families will continue fighting for the cause and spreading awareness. And although this is just the year of the walk, the support it has received, has doubled.
"People in the hemophilia community are up to speed on their issues but the outside community, even the medical community, is not as well educated (about) hemophilia as we are as parents," Hugs said.
Hemophilia is the fifth most expensive disorder to treat and there is no cure.
Organizers said this year, they received more than $40,000 in donations. Half of that will go to the local chapter, Rocky Mountain Hemophilia and Bleeding Disorders Association, and the rest will go to the National Hemophilia Foundation.