When Derek was 1 week old, he began experiencing uncontrollable fevers and unexplained bleeding. His mother, Hildelu, knew in her heart that something was seriously wrong, but time after time, her concerns were dismissed as she was told, “It’s fine; it’s just a virus.”
Derek’s parents continued to press for answers, ultimately seeing about 20 doctors in their search for a diagnosis. In January 2016, they brought Derek to Benjamin Wright, MD, a pediatric allergist and immunologist at Phoenix Children’s. For the first time, they felt hopeful that they would learn what was making Derek so sick. “He gave me hope,” Hildelu says. “I knew something was going on, and he listened.”
Derek underwent genetic testing at Phoenix Children’s, and in August 2016, his family finally got the answers they were looking for. Derek was diagnosed with hyperimmunoglobulin D syndrome (HIDS) / mevalonate kinase deficiency (MKD), a genetic disorder so rare that only about 200 people worldwide have been diagnosed with it. The main symptoms are fever, inflammation and a compromised immune system. There is no cure, but it can be managed.
Hildelu says that getting Derek’s diagnosis was a relief. “It gave me peace inside me. I knew something was wrong.”
Since Derek’s diagnosis, Phoenix Children’s has become a second home for him and his family. Derek periodically experiences flare-ups of his condition, especially if he gets excited or tired. His flare-ups include fevers and body pain, especially in his joints and belly, as well as fatigue and lack of appetite. He recently started taking new medications that help control the flare-ups. Before he began taking the new medications, his flare-ups lasted up to 10 days; now, they average about 48 hours in length.
Child Life, one of over 170 donation-funded programs at Phoenix Children's, has been a big help for Derek during his visits to the hospital. Because he has a lot of scar tissue, it can be difficult to start his IV. The Child Life team helps him cope with his fear and anxiety about IVs. One time, a Child Life specialist demonstrated the procedure on a stuffed animal. This helped Derek relax, and his care team successfully inserted his IV.
Hildelu says their family is grateful to Phoenix Children’s. “This hospital changed our lives in a good way. If it hadn’t been here, I don’t know what would have happened,” she says.
Derek's Interests
Soccer
Roblox
Playing the piano
- “This hospital changed our lives in a good way. If it hadn’t been here, I don’t know what would have happened.”HildeluDerek's mom
Phoenix Children’s Patient Ambassadors are a valiant bunch—they’ve shown immense strength amidst great setbacks. They’re also athletes, intellectuals, artists and the best siblings.
Even though their lives are full of medical appointments, they want to help other patients. Each ambassador has created a fundraising page to support Phoenix Children’s. Consider donating to Derek's fund today.
