Wheels for Nick

$40,575 of $60k goal

Raised by 114 people in 26 months
Nick Mahler  WYLIE, TX
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.
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.
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Update 10
Posted by Nick Mahler
3 months ago
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Hey Everybody I just wanted to say hi and say thanks again for making my wheelchair possible. If you donated money to Wheels for Nick and would like a statement to file on your taxes please contact me ASAP and I will get one emailed or sent in the mail immediately. Some people have already got with me for their statement but there are still some that need them. GFM doesn't supply contact info so I couldn't automatically send one to you. You can contact me on Facbook, the GFM page or send me an email at donations @wheelsfornick.com

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.

Nick Mahler
Me in my new wheelchair
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Update 9
Posted by Nick Mahler
8 months ago
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I want to thank all of the people who have recently donated to my custom built wheelchair fund. We are getting closer to our goal but there is still a mountain ahead and I know we can accomplish our goal. We've had people ask so I wanted to make sure everyone knows, WheelForNick is a Texas-based 501c3 charity organization that is approved/certified by this website is registered with the IRS. This means that we can issue a form so you can take your charitable donation off of your personal or business taxes.

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.
Me on my scooter at the Nugget Reno on our way to San Francisco.
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Update 8
Posted by Nick Mahler
9 months ago
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Hey everyone I just wanted to give you an update on our journey to get my wheelchair. The insurance company has denied the most important part, the lift/tilt part, of my Permobil F5 again. We had submitted additional information and detailed explanations from the top FOP research doctors as to why we must have the requested parts. Without the lift and tilt feature the chair would just be a new piece of furniture because I wouldn't even be able to get on the chair to use it or use it. I have sent videos to show how difficult and dangerous it is for me to currently transfer on/off my 48yo Amigo scooter.

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.
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Update 7
Posted by Nick Mahler
12 months ago
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Here is a video of how I transfer off of my scooter that I currently use and you can see when I sit down that none of my joints move. With the progression of my very rare muscular skeletal disease, Fibrodysplasia Ossificans Progressiva or FOP, the only joints that I still have minimal mobility in are my elbows, wrists and fingers. I do not have full range of motion like most people because my elbows only bend so much, my wrists can't turn flat and 4 of my fingers on my left hand have very limited motion from breaking my wrist when I was 10yo. Please share the videos and website with your friends so we can get the equipment I need to make life a little bit easier.
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$40,575 of $60k goal

Raised by 114 people in 26 months
Created March 2, 2015
CK
$125
Carley King
6 days ago

Happy Birthday Nick! Hope you had a great day!

MT
$200
Mike & Melinda Truitt
7 days ago

Happy 40th Birthday Nick! You are a true inspiration! Blessings! Mike and Melinda

$25
Anonymous
1 month ago
$50
Heggie Schaal
7 months ago
1
1
JV
$100
Joy Veal
7 months ago
1
1
NO
$22,000
nick orlandino
7 months ago
7
7

you are a true inspiration!

MK
$75
M Keith
7 months ago
2
2
CK
$170
Chris Kalev
7 months ago
2
2
YS
$100
Yvonne Salas
7 months ago
1
1

Lots of POSITIVE ENERGY going your way, Nick!! GOOD LUCK!!!

$5,000
Anonymous
8 months ago (Offline Donation)
3
3
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