Wheels for Nick

My name is Nick Mahler and I have a very rare muscular skeletal disease called Fibrodysplasia Ossificans Progressiva or FOP for short. I live in Wylie Texas and I was diagnosed with FOP when I was just 18 months old. FOP has progressed so much that I only have limited movement in my elbows, wrists and fingers, every other joint including my jaw are completely covered in bone growth. An FOP flare-up can occur from any kind of trauma to a muscle such as bumping into something or sometimes when a butterfly flaps its wings in Argentina I will have a flare-up. Currently there is no cure for my disease, just pain management and extra care not to get injured.

We had a successful fund raising campaign in order for me to get my much needed wheelchair that allows me to do so much more than I ever could on my Standing Amigo scooter I used for way too long. I have been able to go on walks with my wife, sister and friends around our neighborhood whenever I want without having to plan ahead to make sure I could stand on my scooter or the path was accessible to my scooter. The new Permobil F5 VS Standing wheelchair helps me sit up and stand all on my own as well as go over rough terrain that previously would have been impossible.



Our next quest is getting a Braunability Chrysler Pacifica Mobility Van to carry my wheelchair in because it is so large that we have to remove parts of the wheelchair to load me and my chair in a Grand Caravan/Town & Country. We have also looked at the Sprinter style vans but they are not very parking garage or valet parking friendly and my wife and sister who drive me around have trouble getting in such a large vehicle. We have rented several different vans to go to my natural history study trips to California as well as trips for IFOPA sanctioned events, renting vans is very cost prohibitive so we have to forgo important events because of the expense to rent a van.



The Braunability Chrysler Pacifica Mobility Van has the largest interior of any mobility van on the market as well as being the most comfortable. This vehicle will be a life-changing vehicle since we would be able to go almost anywhere with my wheelchair from church on Sunday to helping with the food bank. It will also make it easier to go see entertainment such as rodeos, concerts and theater trips that are almost impossible now since I have lost almost all movement in my ankles. The best part of getting the van is that my sister will not have to lift my 125lb scooter in and out of our car like she has to do right now. I would also be able to go places with just my wife to dinner, right now it's at least a 3-person trip to go anywhere with my scooter. Right now I am unable to go anywhere outside the home if it's raining/snowing or any chance of it doing so, due to my instability of no joint movement.
We have several different ways for you to help us on our quest for the wheels for Wheels for Nick, We are a 501(c)3 IRS registered charity so all donations can be a tax deductible donation. We can accept a donation through this GoFundMe page, personal or corporate check as well as wiring money to our charity bank account. For large donations it can be easier for you to mail a check or do a wire since there is a large percentage that gets taken right off the top here. We appreciate any and all donations no matter the size.

There are only 6 people in Texas that have been diagnosed with FOP and 3 here in DFW. In the world there are just 800 people with FOP with less than 300 based in US. Even though I have no movement in most of body I still try to do everything I think I can do. To date I am the only FOP patient to have Bungee jumped and ride in an air force jet. I have been married for almost 17 years and since I can't fly we have to drive everywhere. We had to drive to Philadelphia to have my oral surgery done in 2015, We drove to Boston in November for an FOP Drug Forum that got the venture capital guys together with the researchers from around the world to move on to the next phase of drug trials. The FOP gene was found in 2008 with the help of a research dentist at UTSW and the FOP Lab at UPenn Philly.