Hi there, my name is Molly, I’m 28 years old, and I have a rare disease called Friedreich’s ataxia. This disease is even more challenging to live with than it is to pronounce! I was born with it, but I didn’t start showing symptoms until I was 10 years old. From there I was diagnosed through a blood test showing that I had inherited the rare, progressive disease from my parents. At the age of 10, my functionality began to diminish. First it was difficulty walking, difficulty hand writing, constantly breaking bones from bad falls, and then I couldn’t walk without assistance, and then I couldn’t walk anymore.

Right now I use a power chair or a manual chair as my main source of locomotion. This disease is debilitating and in some cases, life shortening. FA also causes scoliosis, serious heart conditions, diabetes, and extreme muscle weakness. Due to this, I can no longer transfer from my chair to another place without assistance. It is incredibly limiting to be dependent on others when for a long time I thrive on being independent.

However, I have discovered a device called a Sure Hands Ceiling Lift. This is a harness that clamps onto one’s thighs and chest and it is connected to a track that is placed in the ceiling. Depending on where the track is set up, someone can get into their bed and into the bathroom with ease. The best part is you can use it independently! You can operate this device with a remote control and you can travel throughout your house without the assistance of others. When I discovered this device, I was thrilled! This is just what I need to give me more independence!

Unfortunately, when I saw the cost, I was blown away. I am still hopeful about this device and I pray that with the financial help of the community, I could afford it. It would change my life and open so many closed doors. Life with FA is never easy and with the future being unknown, Im trying to live every moment to the fullest. Thank you for your support!

With love,

Molly