Caden Buth: enjoying life without regret
Karate classes. Birthday parties at trampoline parks. Riding scooters with friends.
These are typical activities for a 12-year-old boy. But for much of his childhood, such pursuits were out of reach for Caden Buth of Mulberry, Florida, due to a severe bleeding disorder.
Caden was diagnosed with severe hemophilia A at four weeks old after complications from a routine circumcision landed him in the emergency room.
Infusions were the go-to hemophilia treatment, replacing the protein missing from his blood. Within six months, Caden’s immune system developed an inhibitor, or antibody, that rendered his treatment ineffective. His healthcare team tried a bypassing agent, plus immunotherapy, to encourage his body to tolerate the infusions.
But Caden’s inhibitor levels just got worse, and he experienced many painful bleeds to his knees, elbows, mouth, and more. For the Buth family, hemophilia meant sleepless nights, unplanned time away from school and work, and missed family and social events. On top of it all, a port infection required the then-toddler to be hospitalized for six weeks in 2015.
I have spent the past eight years telling everybody I know about PAN.”
Christina, Caden’s mom
“We had a lot of those ‘hold my juice box’ moments when they thought one thing would happen and Caden’s body did another,” recalled his mother, Christina.
But then an advanced treatment came on the market—and none too soon, as Caden had just been through one of his most severe bleeds in response to a flu shot and other immunizations. This new medication would be inserted just under the skin and help his body maintain enough protein to produce blood clots. They delayed treatment until after his little sister Cailani’s birth in December 2017. Caden has been taking the medication since February 2018, with wonderful results.
“Life has really turned around for Caden. He’s not bleeding as often. It’s giving him a normal existence. He gets to do what other kids get to do without the fear of bleeding,” shared Christina.
Along the way, the Buths learned about the PAN Foundation. When Christina and her husband, Chhorn, changed jobs in 2016, they were faced with a 90-day gap in the family’s health insurance coverage. They paid for their son to temporarily be on Medicaid.
Then, once they were back on a private health plan, they turned to PAN to help with the high out-of-pocket medication costs for Caden. The PAN copay grant “helps take the burden off” Caden’s medication costs, said Christina. “I have spent the past eight years telling everybody I know about PAN.”
She also appreciates that the grant from PAN counts toward the family’s annual deductible and out-of-pocket maximum. With past health plans, they have dealt with copay accumulator programs that didn’t honor financial assistance from manufacturers or other sources. The Buths would get assistance in the beginning of the year—but then still owe their entire deductible.
“It really scares you. All of a sudden, the money that you were counting on to help cover your child’s care is gone,” Christina said.
“As a middle-class family, we don’t have thousands of dollars just sitting around. My husband and I both are employed, but our family struggles financially with a child with such a severe medical condition,” she added. “To have somebody [like PAN] who backs you up, that’s important to me.”
Now in sixth grade, Caden is taking on more responsibility for managing his condition. Along with learning to play the saxophone, he’s learning to self-inject his medication every two weeks. He knows his limitations and the steps everyone—parents, friends, coaches, teachers, and Caden himself—must take to reduce the risk of bleeds. His doctor may have said “no” to football, but now the middle schooler has set his sights on skydiving once he’s an adult. (Along with becoming a DJ.)
Caden is also open about his hemophilia whenever someone asks about his medical alert bracelet, or if he senses an activity might be unsafe. As he gets older, he’s learning that speaking up not only helps him—it helps raise awareness for others with rare bleeding disorders.
“I’m kind of open about it, I’m not closed in,” Caden said. “Even if they made a cure for hemophilia, I might not take it—because it’s what makes me, me.”
That outlook has always served him well, according to his mom.
“Caden has always been a glass-half-full kid, happy-go-lucky,” Christina said. “His attitude has helped us see hemophilia in such a positive light and made it possible for him to live with it without regret.”