Marlene and Cody Horne
Involvement with HFGF: Seven years
Cody Horne just wants to play soccer.
The seven-year-old son of Marlene is so set on that goal that he asked the doctor for her permission on a recent wellness visit. While he did get the go-ahead he was seeking, his mom is not so sure.
“The doctor said it will help with his joint health,” says Marlene of Jacksonville. “I’m just nervous.”
With more trips to the ER and more hospital stays than most of us will ever have to bear, it is no wonder Marlene is a bit apprehensive about having her son participate in a contact sport. Cody’s case is a bit more complicated than most because of allergies.
Born in Jacksonville, Cody did bleed more than normal during his circumcision, but was not diagnosed with severe Hemophilia B until eight months later.
“We had taken him for blood work and they had issues finding a vein,” Marlene recalls. “So they pricked his finger, and he kept bleeding through the bandage. I took the bandage off six hours later and blood was everywhere. We went to the ER and that’s how I found out he had Hemophilia.” The next day he began treatment at Nemours Children’s Hospital.
But Cody’s Hemophilia story was still unfolding. Marlene noticed he was having breathing issues and that his skin was breaking out following infusion therapy. He was also getting hurt a lot and forced to go to the hospital for bleeds.
“One day after a bleed, we went to Nemours Children’s Hospital and he was treated,” she says.
“Then he broke out in hives and his body swelled up. He was 18 months old. It was scary.”
It turns out Cody was allergic to Factor IX, the treatment that was so crucial for his well-being. In order for him to accept Factor IX, doctors needed to desensitize his system by administering small doses of Factor IX, building up to larger and larger doses each time until his body stopped rejecting the factor. For the next nine months he required an infusion every other day.
To their collective reliefs, today Cody is down to one infusion a week.
“He is a normal active little boy,” adds Marlene. “He has lots of energy.” Besides soccer, Cody, a Cub Scout who turns 8 on September 1 and will be entering third grade, also likes to swim, fish and play video games. He has already endured stitches twice on his little nose.
Marlene notes that Cody is now old enough to know what is going on.
“He realizes what he has,” she says, “and sometimes asks, ‘Why me? Why do I have to have it?’”
That’s why Marlene tries to get Cody involved with other families with Hemophilia children.
“He is friends with Aaron Tuttle, both have severe B,” she says.
Involvement with the Foundation has also helped Cody deal with his Hemophilia, especially through Camp Spirit that he attended for the first time this past summer.
“He loved it,” Marlene says. “He met a friend there and told me when he turns 21, he wants to volunteer there.”
Involved with the Foundation since the diagnosis, the Hornes have participated in the Jacksonville Creepy Crawl 5K and Vampire Mile as Team Cody and attend symposiums.
“I think the Foundation is great and I love Missy, Cody’s first nurse,” adds Marlene, who found out she was a carrier last year. “I cried when she left.”
While it has been a long road for Marlene and Cody, with the help of doctors, her friends and the Foundation, the single mom and active young boy are doing just fine.
“The first few years were very rough,” she says. “But I am good now.”
Participating in events like the Jacksonville Creepy Crawl 5K and Vampire Mile funds things such as sending Cody to Camp Spirit, where he learned how to self-infuse, become independent, and met other kids with bleeding disorders. 89% of fundraising dollars at events like the walk also fund educational program, scholarships, emergency financial assistance, and other needs for patients and families like Cody and Marlene.