Help Madison Fight CMT4J
Donation protected
Hi, we are Steve and Linda Connelly and we are fundraising to help our 18 year old daughter, Miss Madison. She is living with CMT4J, a progressive and very rare genetic disease that’s similar to ALS. There’s only roughly 25 known cases in the world. There’s no cure or treatment for this disease, but there’s a natural history study being done on CMT4J and Madison is part of the study.
CMT4J has taken a lot from Madison. She can no longer walk or use her hands, eating is a problem now, and her speech is hard to understand. She also has Autism and several mental disabilities, although she has a lot of issues, she still thinks she has a great life. She needs 24 hour care and help with pretty much everything.
The funds we raise for Madison will go towards
Madison has an electric standup wheelchair that weighs about 400 pounds. Right now she can only use it at home. Having a wheelchair van will make life so much easier for her and give her more opportunities to enjoy life. She sees doctors at Duke, Vidant and University of Iowa, it’s hard getting her to these places without the proper equipment. Right now she only goes to the doctor and the hospital. Without proper transportation, it’s to much for her to go anywhere else. I, her mother, love taking care of her, but it’s hard having to lift her to get downstairs and in the car. Madison is worn completely out before we even leave the driveway. Steve, works with the Arizona Diamondbacks, so he travels often, and when he’s home, he’s a wonderful, loving father, and he spends all the time possible with Madison.
Thank you so much for taking the time to read a little of Madison’s life. I tried keeping it short even though there’s so much that can be said. This doesn’t cover much of what Madison and our family goes through, but it’s a start. We appreciate any help given and we will update what is purchased and her story. Please share her story as much as possible. We truly appreciate you!
God Bless Everyone!
Steve and Linda Connelly
CMT4J has taken a lot from Madison. She can no longer walk or use her hands, eating is a problem now, and her speech is hard to understand. She also has Autism and several mental disabilities, although she has a lot of issues, she still thinks she has a great life. She needs 24 hour care and help with pretty much everything.
The funds we raise for Madison will go towards
- A full size wheelchair accessible van.
- Home wheelchair lift. Our home is on stilts.
- Finish the downstairs so Madison can stay downstairs. It will give her so much room to move around in her chair.
Madison has an electric standup wheelchair that weighs about 400 pounds. Right now she can only use it at home. Having a wheelchair van will make life so much easier for her and give her more opportunities to enjoy life. She sees doctors at Duke, Vidant and University of Iowa, it’s hard getting her to these places without the proper equipment. Right now she only goes to the doctor and the hospital. Without proper transportation, it’s to much for her to go anywhere else. I, her mother, love taking care of her, but it’s hard having to lift her to get downstairs and in the car. Madison is worn completely out before we even leave the driveway. Steve, works with the Arizona Diamondbacks, so he travels often, and when he’s home, he’s a wonderful, loving father, and he spends all the time possible with Madison.
Thank you so much for taking the time to read a little of Madison’s life. I tried keeping it short even though there’s so much that can be said. This doesn’t cover much of what Madison and our family goes through, but it’s a start. We appreciate any help given and we will update what is purchased and her story. Please share her story as much as possible. We truly appreciate you!
God Bless Everyone!
Steve and Linda Connelly
Organizer
Linda Carlisle
Organizer
Bear Creek, NC
