Overcoming obstacles and living life to the fullest

Nick with his wife, Lori

When the phrase “everything is bigger in Texas” was coined, it’s fairly certain the author had encountered Nick Mahler’s personality. This Dallas resident takes a no-holds-barred approach to most subjects in life, including living with FOP.  

Known to hand out FOP awareness bracelets to “anyone who looks sideways at me,” Nick does a great job when it comes to sharing information. 

“I’ve talked to at least 100 doctors in my underwear – I’m not too modest anymore. I’ll take photos of people staring at me to turn awkward situations into opportunities to talk to strangers about FOP and the IFOPA,” he said. 

He meets new friends and connects with his IFOPA family at many IFOPA events, which he attends with his wife of 17 years, Lori and sister, Amanda. Nick was at the very first Family Gathering in 1991 in Orlando, Fla., and has been happy to see the growth in the number of families in attendance since the Gatherings began. 

Amanda says, “Attending the family events has been really informative and helpful.” 

Lori agrees, “We connect with people and build a support network. It is also interesting to meet IFOPA board members and learn about their roles in the organization.” 

The personal connections established at Family Gatherings support the strength of the bond so easily witnessed in the FOP community. Of equal importance is the strengthening of research and improvements in the medical world for people living with FOP. 

Although Nick puts a positive spin on everything he can, there have been great difficulties to overcome in his medical history. In 2015, he went through oral surgery in Philadelphia to remove abscessed teeth. To ensure a successful operation he had to endure two years of preparation. For the surgery there were more than 25 doctors in the operating room, including specialists all the way from China. Twelve of the teeth that were extracted were able to be used by the Center for Research in FOP and Related Disorders at the University of Pennsylvania for FOP research. 

Because of the willingness of people with FOP to share with researchers and physicians, strides are continually made as critical care teams become increasingly familiar with how to provide expert treatment without having to travel too far. 

After attending the 2016 Family Gathering in St. Louis, Nick left with feelings of promise. “FOP education is spreading across different disciplines and dentists are hearing more about it,” he said. 

Nick’s favorite part of Family Gatherings is sharing his life tales with younger members of the FOP family. He grew up enjoying an adventurous life; riding horses, playing golf and he owned a racing tricycle he modified to participate in biking. Nick picks hobbies most people don’t think of first off. He has competed in car stereo competitions, has a degree in industrial robotics and enjoys flying drones. He decorates cakes; volunteers at the food bank; runs various social media accounts and websites, including his church’s; and attends concerts and professional bull riding (PBR) events. He never lets anything stop him from what he wants to do. 

Now owner of his own business, he has pride in living his life to the fullest. And he suggests parents of children with FOP just “let ‘em be kids, let them enjoy themselves!” It’s safe to say, in turn, Nick is going to continue being himself and enjoying life despite the discomfort of FOP.