Resides: Newberry, FL
Hometown: Newberry, FL (Born in Daytona Beach)
Involvement with BDFF: Three Years
Alex Wyrick already knows what he wants to do with his life. The ten-year-old native Floridian has his mind set on becoming a chef. His palate was enticed further while attending Camp Spirit at Boggy Creek this year where he found the food to be “awesome, especially the garlic knots.” He is now honing his craft in his home kitchen with his mom, Mandy, that is, when he is not roughhousing with his older brother, Josh.
“He is really active and adventurous,” says Mandy, who is on the 2019 fundraising committee for the Bleeding Disorders Foundation of Florida’s Gator Clot Trot. “He doesn’t stop. Josh is very supportive of Alex, but cuts him no slack.”
Because Josh tested negative to hemophilia when he was born—Mandy’s brother has hemophilia—Alex’s diagnosis of Hemophilia A was a bit unexpected. Mandy and Mike thought they had dodge the disorder.
“When Alex was born, something told me we should test him,” she recalls. “It was kind of a shock for me, but I pulled it together.”
“It was a little harder on me because I didn’t know anything about hemophilia and hadn’t grown up with a sibling who had it,” says Mike. “I initially thought I wouldn’t be able to play with him for fear of hurting him. Thankfully, I’ve learned that my fears were unfounded.”
As the family adjusted to life as part of the bleeding disorders community, Mike and Mandy made a conscious decision to let Alex live a normal life. Mandy remembers her parents putting her brother in a bubble in the 1980s and did not want Alex to grow up in that fashion.
“We try to give him some leeway,” says Mandy. “My husband and I aren’t holding him back from what he wants to do. We will let him try whatever it is.”
Part of that became easier with age.
“Alex has matured quite a bit over the last couple of years,” notes Mike. “He used to hide his bleeds from us because he didn’t want to be treated. Now, he tells us when he’s hurting and asks for a treatment as soon as he needs it.”
They now all work diligently at staying ahead of any trouble, minimizing treatments and complications. Because of that, Alex averages only one to two infusions every other week, all at home.
School days are closer to normal as well and Alex is able to go to school more often, as opposed to when he missed so many days of kindergarten Mandy and Mike held him back. Enlightening school administrators on hemophilia, though, continues to be a challenge for the Wyrick’s as it is for many parents of children with bleeding disorders.
“I don’t feel they are all that educated on it,” Mandy admits. “They have heard of it, but don’t grasp what it’s all about. Alex may have a bleed in his hand, and he can feel it. But they can’t see it. There is no outward sign. The invisibility of hemophilia is a struggle.”
Recognizing the physical aspects of hemophilia is one thing, but there is also the mental side.
“Last year at school, people said I was weird,” says the Newberry Elementary School fourth-grader. “So I explained it to them. I feel like I am the same as them.”
“The one word that I would use to describe Alex is strong,” adds Mike. “Hemophilia has caused him a lot of pain during his 10 years of life, but he doesn’t let it get him down. It really makes me proud to be his dad.”
Keeping the chin up and taking a higher road is where Camp Spirit can play such a major role, especially for Alex who is coming to terms with his hemophilia.
“Camp was his first time away by himself, besides his grandparents,” says Mandy. “But we felt confident in the Foundation. He loved Camp Spirit, and he came home more adventurous, more talkative and more confident. He learned to infuse himself. Now he talks through it.”
“There was painting, bow and arrows and fishing, and I caught three fish,” Alex beams. “We went on a boat tour and I saw eels. The only rule was to have fun.” He also liked that the kids at camp were all on the same wavelength, each dealing with a bleeding disorder.
“Alex is now getting more involved and doing things like this interview,” says Mandy. “It is bringing him out of his shell.”
Adds Alex: “I am happy that everyone gets to hear my story.”