Molly’s standing frame

Hi my name is Bob, and I am starting this fund for my daughter Molly. She has a rare form of muscular dystrophy called Friedreich’s ataxia. This disease has robbed her of almost everything, her ability to walk, talk clearly, write, and it just keeps going. FA is a debilitating, neuro degenerative, muscle wasting condition and only about one in 50,000 are diagnosed with it.

 

Currently, she is having an unbearable amount of pain in her foot. It started in January, when the tone in her legs started to progress. She couldn’t keep her legs on the wheelchair pedal,  her legs would just shoot out straight in front of her. However, shortly after that she developed dropfoot syndrome in her right foot. The heel and ball of Molly‘s foot sag towards the ground and her foot is curling under. Instead of laying flat on the ground, Molly‘s foot lies on its side. We have seen multiple doctors regarding it, and she has undergone many treatments including Botox injections in her legs. However, nothing seems to release the tight position it wants to be in. To make it worse,  her foot has become extremely painful. I have never seen her experience so much pain for so long. It is frozen in this turned and sagging position and there is little we can do to break the position. We discussed surgery with a doctor and he was saying it was an option, but in the meantime he suggested we get a standing frame.

 

A standing frame is a device to help people who can’t stand on their own. Molly would start by getting into the chair on the device, and getting strapped in very tightly so she won’t fall forward. Then, the device is slowly pumped up, and the chair slowly rises until Molly is in a standing position. She has tried using a standing frame a few times in physical therapy and we are amazed by it. We would love to have one, especially with her foot and the pain she is experiencing. The doctor suspects it will stop her foot from curling under even more.

 

The problem is the price. Not many people have the accessibility to $8000 on demand. As Molly‘s condition is progressive, she continues to need new medical supplies to assist her daily living and give her a quality of life. Please consider helping our family and giving pain relief to my daughter.

 

I remember what it was like before we even heard the word Friedreich’s ataxia and how simple life seemed. Molly and I loved to play frisbee or catch in the backyard. Now she needs a standing frame. Life can be brutal and unfair but we are grateful for her and our family. Please consider helping us.