Tyler's History

Shortly after turning a month old, Tyler developed three lumps on his head, each one a few centimeters in size.  A CT scan was done to diagnose those lumps, and another lump was discovered in his collarbone. After seeing an oncologist and an orthopedist, we were referred to a plastic surgeon who felt that the lumps needed to be removed because they were indenting his skull. At three months old, Tyler underwent the surgery. After removal, the lumps were biopsied and we were given a diagnosis of cranial fasciitis – a completely benign condition. Additional lumps appeared during the next year and a half, but would then completely disappear a short time later to the amazement of the plastic surgeon. We saw several doctors in his first few years for his various lumps, but no one gave us any reason for concern.

As Tyler grew, things seemed pretty normal, or so we thought. We noticed that he looked stiff and crooked when he ran, but we chalked it up to him being gangly and awkward. His shoulders were uneven, but we thought he just had bad posture. We did not notice that at some point he lost the ability to turn his head to the side, that he was turning his entire body instead.

In August 2020, Tyler had a physical where he received the TDAP vaccine in his muscle. A few weeks later, he played a two-hour game of corn hole with neighbors where he vigorously swung his arm back and forth.  Unknown to us at the time, intramuscular injections and over-exertion of the muscles are both things to avoid with FOP. Shortly after that, he complained of pain in his back and half his back swelled up almost to the size of a football.  

In the span of two months, it was amazing how many times medical professionals said to us “I’ve never seen anything like this before.” We were even told not to worry by doctors at a large university medical center, that all of Tyler’s blood tests came back normal so it couldn’t be anything serious.

Tyler was ultimately diagnosed with FOP at age 12.