Wheels for Nick
As you can see from the current photos of me on my 48-year old scooter I am kind of balancing on the left leg the whole time with my right leg on the edge of my scooter.
I have started this GoFundMe account to assist in getting a very specialized wheelchair for me that can operate while in a semi seated position since that is the position I am frozen in. Once we have the custom built wheelchair we will need a way for us to transport me and my new wheelchair. Currently I use an Amigo FD mobility scooter that is more than 40 years old because it has been the best option until now. It is getting very difficult to find a vehicle I can physically get in and this will only get harder as I continue to lose movement. With my very limited range of motion I can't step up onto anything and require assistance sitting or standing from a chair and almost all daily activities. With this custom wheelchair I will be able to go more places, since my old scooter can't go very many places due to me being very unstable on any kind of uneven or angled surfaces. Currently I am unable to go anywhere outside the home if it's raining, a chance of rain or snow due to my instability from no joint movement. The above photo is me trying out a Permobil wheelchair to see what modifications would be required. We will have to have extensive modifications to the chair because of my unique fixed position to be able to clear doors and other areas without injury.
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 16 years and since I can't fly we have to drive everywhere. We are having to drive to Philly to have my oral surgery done in the next month, 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.
Thank you kindly for the generosity and support of everyone, any little bit helps make my dream of mobility a possibility.
Thanks again for your donations, it is truly a blessing. Now we have to work on getting a wheelchair accessible van to take my chair with me.
As I continue to gradually lose the little mobility I have left the more important this wheelchair becomes to my unique condition and my freedom to continue spreading awareness of FOP. I understand that you will see this in your Facebook news feed and you might not have the funds to donate but if we can get a shared post or a mention that will really help.
This trip to California has been one of the hardest I have done due to my ankles being fused more than ever. If I try to get on my 48yo scooter on anything but level ground my brain tells my body that this is not safe and everyone around wants to hold me up because it looks like I am tipping over. We have encountered many obstacles due to a location being wheelchair accessible but not Nick-Cessible as we call it. I truly appreciate all of the people who have supported me so far and look forward to getting my chair. If anyone has any questions about anything in regards to my WheelsForNick, FOP or my journey feel free to message me.
A wheelchair would make a huge difference in my daily life as well as my ability to travel outside the house. Right now we have to severely limit where I go due to my increased instability while using my scooter. I appreciate all of the people that have donated to wheels for Nick so far. It is a 501(c)3 charity organization so any donation can be issued a receipt for your taxes whether a business or personal.