BDFF Spotlight: The Tuttle Family
Megan Tuttle, Mother of Aaron (Severe Hemophilia B)
Resides: St. John’s County
Hometown: Pittsburgh, Pennsylvania
Involvement with BDFF: Six Years
Aaron Tuttle goes through cycles when it comes to being accepting of his infusions. At times, he wonders aloud, “Why do I have to do this? Why do I have to be different than other people?” Then, other times, he is totally amenable to the treatments and his lot in life.
“It is definitely a roller coaster,” says his mom, Megan, a carrier who believes Aaron’s hemophilia was contracted by a spontaneous gene mutation in her mother. “But overall, he is a really happy kid.”
Diagnosed at birth with severe hemophilia B, nine-year-old Aaron needs to infuse factor IX once a week. His brother, Reece, does not have hemophilia, which poses its own challenges. “I don’t discriminate between them,” Megan says.
Megan and her husband, David, became involved with the Bleeding Disorders Foundation of Florida about six years ago when they attended their first walk that took place at Jacksonville University. The following year, Megan landed on the planning committee for the annual Jacksonville Creepy Crawl 5K and Walk, a position she still holds. Since then, walks and summer camps have become regular activities in their lives.
Megan says Aaron will attend Camp Spirit at Camp Boggy Creek this summer for the third consecutive year, an outlet Megan says does wonders because the other kids are just like him.
“There is not a big [bleeding disorders] community here with kids his age,” she says. “The camp has been a major boost in his acceptance.”
But it’s not like Aaron is just sitting around trying to fit in. He plays soccer, is involved in gymnastics and takes Tao Kwon Do.
Another key factor in Aaron becoming more accepting of his disorder was the introduction of a long-acting coagulation factor IX treatment about five years ago, just when he was starting school.
For Aaron—and Megan and David—that means just one infusion a week, more palatable than his twice a week infusions for the first five years of his life. The treatment has a larger price tag, but insurance covers the expense. That means before a big sports weekend that may include practice one day and a game the next, they infuse Aaron on Thursday after school and he remains at peak through Saturday, allowing him to play like any other boy or girl.
“He is a very active child with no fear,” Megan says. “He’s just a normal kid.”