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Haydens Story



Born May 15, 2000, Hayden Donald Pheif screamed his way into the world – a normal, healthy baby in all respects except for funny-looking big toes.


From teething to temper tantrums, all was normal until Hayden was two. Just a couple of months after his 2nd birthday, Hayden had mysterious swelling in his back and neck and suffered from loss of motion. The search for a cause began. Initially diagnosed with Fibromatosis, Hayden was referred to Doctor Robert Goldsby, a pediatric oncologist at UCSF. Doctor Goldsby was not convinced this was the correct diagnosis, but after sending Hayden to several other specialists, and after having Hayden’s case discussed at a number of doctor’s conferences, Doctor Goldsby still did not have a satisfactory diagnosis. Purely by chance, Kelly Alexy, a neo-natal nurse practioner, overheard Doctor Goldsby discussing Hayden's symptoms with a radiologist, and she asked the telling question: “Does Hayden have abnormalities in his big toes?”


Purely by chance that Kelly knew about the disease from family connections to another FOP patient, and purely by chance, she had been in the room when Hayden’s case was being discussed. While FOP wasn’t what anyone wanted as a diagnosis, at least we knew what he had, and we had a referral into the world's expert on the disease, Doctor Frederick Kaplan at University of Pennsylvania. And now, we have a mission: to help Doctor Kaplan and his team research for a cure to FOP – hopefully within Hayden’s lifetime!