At 14, Declan woke up with immense, unexplained pain in his arm. He thought it might be caused by growth or cramps, but an X-ray showed that Declan had no normal structure in his arm.
“There wasn’t an explanation for just how much pain he was in just looking at his arm,” says Taizo Nakano, MD, Medical Director of our Vascular Anomalies Center.
After ruling out other conditions, our team diagnosed Declan with fibro-adipose vascular anomaly (FAVA), which stems from a mutation in a gene called PIK3CA. This makes the signal that turns cell growth on and off stay on, causing overgrowth of materials in Declan’s arm.
In collaboration with Boston Children’s Hospital, Dr. Nakano, and Aparna Annam, DO, Interventional Radiology Director of the Vascular Anomalies Center, performed a unique surgery that gave Declan full use of his arm once again. Now on his way to college, Declan is excited for his future.
“I’m basically perfectly healthy,” says Declan. “I take no medication for it. I can just do whatever I want now.”
To learn more about how our care team at the Vascular Anomalies Center is pioneering treatment, visit: https://www.childrenscolorado.org/doctors-and-departments/departments/vascular-anomalies/?utm_source=youtube&utm_medium=social&utm_campaign=slg_ccbd
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