One Family’s FOP Journey and How They’re Raising Awareness—and Raising Funds

Rebecca and Kyle always knew their 8-year-old son, Eli, was a remarkable kid.

“He’s sweet and funny, wild and snuggly, and smart as a whip,” Rebecca expressed.

 The summer of 2016 was filled with appointments and tests after an unexplained lump appeared on Eli’s back. They eventually met with a doctor who put the pieces of the puzzle together, and “Every medical mystery since Eli’s birth – the short toes, stiff neck, and unexplained head lumps – made perfect sense,” Rebecca said.

 “After the initial shock of the diagnosis wore off, we’ve been able to settle into the comforting realization that ‘Eli is still Eli,’ as Dr. Kaplan said to us. We do fun things like swimming, we do boring things like homework, and we laugh, and we cry, but no matter what, the sun always comes up again in the morning.”

Supporting Eli as best they can is Rebecca and Kyle’s top focus. She expressed, “We wanted to learn how to live with FOP, but still keep Eli’s day-to-day as normal as possible.”

They decided to connect with a health psychologist to help Eli cope emotionally with the life-altering diagnosis. Rebecca found communication with his school to be particularly important “To make sure Eli was safe, while also getting the opportunity to play and learn as any other second-grader would.

“We also talked. A lot. We wanted Eli to get to know this new part of his life and be comfortable asking questions about it while also realizing it's just one small part of who he is. We talked about other people with FOP, and showed him some pictures of other kids so he didn't feel alone.

“His face just lit up when I told him most people with FOP have big toes just like his.”

The family knew they could use their strengths in “very different ways” to support the IFOPA. Rebecca said, “Kyle is a biologist whose 15-year career in stem cell research allows him to connect with FOP researchers on their level.” Kyle attended the Drug Development Forum in Boston just six weeks after Eli’s diagnosis, which led him to join the IFOPA research committee. 

Rebecca uses her skill as a communications professional to help get Eli’s story out to as many people as possible to support fundraising and awareness around FOP. 

“We wanted to personalize the IFOPA mission to reach our friends, family and local community first, so we created One Rare Boy, which for now consists of a website, Facebook page, and an 'In Honor Of' campaign as part of Team #cureFOP.” 

Rebecca and Kyle have also come up with some creative fundraising ideas. They’ve hosted an event at a local microbrewery, hosted classes at a yoga studio and held a workshop on re-purposing furniture and household items. 

“We were thrilled to raise more than $17,000 in just two months at the end of 2016, and we have big dreams for future efforts.” 

Rebecca feels immensely grateful for the community her family has found with the IFOPA. “The FOP community reached out immediately to catch us, offering help, comfort, and support before we even knew who to ask or what to ask for,” she said.

“What started out as a feeling of isolation soon transformed into ‘We're in this together.’ We are forever grateful to this community, and we offer our support right back to all of you in whatever way we can.” 

You, too, can celebrate the life of a special person with FOP or even a caregiver or medical professional by fundraising in their honor. When you do, you'll help support the mission of the IFOPA to fund research, family services, and advocacy and awareness.

You can do just about anything to fundraise for the IFOPA. Host a garage sale. Throw a dinner party. Ask for donations to the IFOPA instead of birthday presents.