Ahwatukee Foothills resident Cade Komar is just 7 years old and has been dealing with a bleeding disorder called hemophilia since birth.
Hemophilia is a rare blood defect, usually found in boys, when the blood lacks a certain protein needed for clotting. This can cause cuts to continue to bleed or spontaneous bleeding, which happens inside the body.
"If you and I were walking we might bleed in our knee or something but we don't know because our body takes care of it," said Cindy Komar, Cade's mother and executive director for the Arizona Hemophilia Association. "For him it doesn't take care of it so a lot of times in the joints it can start bleeding and basically just blows up and blood pools in the joint. It's very painful. It can cause permanent damage to the joints."
Cade can do anything a normal child can. He plays soccer, baseball and plays piano but without the infusions Komar gives her son three times a week, he would be unable to do any of that, for fear of him getting an injury.
There are ways to control hemophilia but there is no cure and treatment is very expensive. The AHA helps find ways to cover those costs.
"Currently, hemophilia therapy is among the most expensive in the world with a total annual cost per person ranging from $60,000 to $150,000," said hemophilia-information.com, which is run by a family that has two sons with hemophilia. Treatment for hemophilia was manufactured using donations from human blood during the late 1970s and early '80s. Researchers found that 60 percent of those using this treatment also contracted HIV, according to the AHA. In recent years treatment has been manufactured without use of human blood and is considered safer but because it is given through injections complications are always a risk and can lead to even higher costs for families.
It becomes important for families to understand insurance and health care reform.
"I never paid attention to insurance at all when I was single or even before I had kids really, but now it becomes really important," Komar said, adding that new health care reform helps families with hemophilia by providing no lifetime caps and allowing children to stay on their parent's health insurance until they are 26.
"We have a lot of young adults who can't figure out what to do with themselves when they get out of high school and go to college," Komar said. "It's even more problematic because they have to have health insurance and if they don't have health insurance it's really difficult for them."
Though the AHA commits much time to educating families on how to get help, they are also constantly seeking a cure for hemophilia. One of the ways they support research is through their annual Hemophilia Walk.
The third annual walk will take place this Sunday, Oct. 17, at Chaparral Park in Scottsdale, 5401 N. Hayden Road. Free registration will begin at 8 a.m. with the 5k walk starting at 9 a.m.
"It's a great opportunity for families that don't have a lot of money to get family and friends together and do something for them," said Komar, whose team for the walk is called Tye Dye for Treatment. "It'll be hopefully beautiful weather and a great opportunity to get some exercise and share in a cause, and really help create more awareness. I think that there's a lot of people still undiagnosed with bleeding disorders. There's a lot of different bleeding disorders. Hemophilia happens to be one of them. So I think it'll create awareness and it's a great way to come out and share your spirit with the cause."
Last year, $50,000 was raised for hemophilia research. This year the goal is $75,000.
To register before the walk or to join a team, go to hemophilia.org/walk and select "Arizona."
Allison Hurtado is interning this semester for the Ahwatukee Foothills News. She is a junior at Arizona State University.