Tim and Debbie Hazlett Reflect on Their 18-Year Journey with FOP

“I think what is so endearing about the FOP community is that we work tirelessly, not only to help our own children and families, but other FOP patients, families and future generations that we most likely will never meet,” Debbie Hazlett said. 

Tim Hazlett, 20, of O’Fallon, IL, recognizes the important role his mother, Debbie, plays in his life.

"She has been with me every step of the way, and I know she will continue to be there.” 

Diagnosed at age 2, Tim had the characteristic toes, which led his oncologist to refer him to a geneticist studying FOP. 

In his day-to-day life, FOP mainly affects functionality in his back and hips. 

“My life is pretty much normal,” Tim said. “I don’t drive, but would like to someday if I’m able to recover some mobility in my neck. I enjoy going out to eat with my friends, playing video games and spending time with my dogs, especially my Great Pyrenees, Caesar.” 

Tim is also close with his father, Kevin, and his three brothers, Tyler, Sean and Connor. 

“My husband and sons help to coordinate Tim’s care and meet his current needs,” Debbie said. “They have helped with past fundraising activities, and they do a lot to help around the house. Their support allows me to attend IFOPA events and activities, and take an active role in the IFOPA community through fundraising.”  

In reflecting on their journey since Tim was diagnosed, Debbie emphasized their hope for the discovery of new treatment options. 

“Eighteen years is a very long time to wait when you are a patient or family member of someone with FOP. However, I have developed an appreciation for the complexity of FOP and feel that a major success came with the discovery of the FOP gene,” she said. 

Tim said, “The most challenging thing about FOP is not being able to have full use of my arms and needing help to do certain activities. I’m an adult, and I would like to someday live independently of others.” 

Debbie hopes that in Tim’s lifetime, a safe and effective medication will be developed to allow for the surgical removal of excess FOP bone. She is optimistic this will become a reality in the next five to ten years. 

When asked what the IFOPA has meant to their family, she offered this analogy. 

"The body can’t function without a heart and a brain. The IFOPA has been the beating heart of the body for FOP, joining the brain (researchers, physicians, and pharmaceutical companies), the hands (patients, families and physicians), and the soul (all those involved with the common goal of finding a treatment and cure for FOP).” 

“What I enjoy most about the IFOPA is being able to meet other individuals with FOP, doctors and researchers,” Tim added. 

Debbie concluded, “Together, guided by the IFOPA, we have accomplished so much. I am so proud of my son, and all the patients and families in the FOP community.”