HFGF Spotlight: Javier Aguilu
Hometown: Guaynabo, Puerto Rico
Involvement with HFGF: Thirteen Years
Javier Aguilu grew up in Puerto Rico at a time when treatment for hemophiliacs was scarce. The 58-year-old Casselberry resident inherited his condition from his mother.
“It was nothing new to our family as others were also bleeders,” he says. “But the only treatment back then was getting to the hospital to get infused.” Javier lived a life of reaction, not pro-action, to receive his factor 8.
“Falling from my bed or any little thing made me bleed, and I had to get to the hospital for treatment. I remember spending a lot of days in the hospital.”
Although he knew the consequences of getting hurt, Javier was a boy and wanted to do boy things. He would skateboard and ride a bike. Many times those being-like-a-kid activities landed him in the hospital. But he had to earn his place on the playground, because kids treated him different.
“I just tried to be the same as the other guys,” he recalls. Soon, Javier’s entire outlook toward hemophilia became jaded.
“I hated hospitals,” he says. “I hated doctors. I hated my condition.” Javier also harbored a bit of animosity toward members of his own family. No one else in his immediate family had hemophilia—not his older brother or a multitude of cousins.
There were no support groups at the time or organizations like the Hemophilia Foundation of Greater Florida and when such groups did surface, his cynical side refused to get involved. He remained steadfast in his decision to remain an island even when his sister, Maria, whose son has hemophilia, got involved and became director of the Hemophilia Association in Puerto Rico.
As Javier grew up, he simply buried himself in his work, a 20 year-career with Chevron.
“I was in denial,” he recalls. “I didn’t want to do anything.”
When Javier moved to the Orlando area with his wife, Nancy, following their son Javier’s acceptance to UCF in 2005, something clicked. He realized it was time to shed the old, lackluster Javier and begin to accept his hemophilia and help others do the same.
“I understood that I needed to do something for the community,” he says. “That I can be an example and do something for these families who don’t have the experience I have. Now I am in a place where I can laugh when I look back on what happened to me.”
Javier is especially helpful assisting the Foundation with the Hispanic community, as well as lending a hand with walks and other events.
“I love being a volunteer and try to be an example to the young guys out there,” he says. “I can tell them they have great opportunities. They can do anything. If I can talk to someone and give them support, I am here to do it.”