Getting A Barrier Free Home For The Champagne Family

Hi, my name is Lisa ... I'm an attached mother, very blessed with 3 amazing children, but our middle child, Kody, has a terminal progressive neuromuscular disease called Friedreich's Ataxia and so we are on a time clock with him in which we have no real idea when it will be over.

Kody has Lymphangioma (tumors on the lymph nodes that are beign), Friedreich's Ataxia type 1 (progressive, terminal, degenerative neuromuscular disorder), Hypertrophic Cardiomyopathy (thickening & stiffening of the left chambers of the heart)that is quickly destroying his heart, scoliosis (abnormal curvature of the spine), dysphagia (weakening of oral muscles). He uses a wheelchair to get around since his leg's have been failing him due to loss of sensation and feeling. He visits the Cardiologist every 3 months to get updates on what's going on with his heart. Kody no longer attends school but is homebound taught instead because of the fatigue and low blood pressure from his heart weakening. Kody has begun to ask me questions no mother wants to heart. (ei: Does dying hurt? Why can't you fix me mommy? What happens when you die? Why did God do this to me? Why won't doctors find a cure for me?)

We have two daughters (Nisa & Rikki) that see the decline from two very different angles. Rikki thinks brother just walks funny & so she takes it to a basic level saying what she sees due to how young she is. Nisa on the other hand is old enough to know whats going on & where things are going. Honestly knowing what she knows she is holding things together way better then someone would ever expect. She's an honors student as well as a really well adjusted young woman.

Kody's condition is terminal & so we are doing what we can. Currently we both work outside the home but I have been trying desperatly to find things to do from home so that I can tend to Kody's needs myself. When I do have any free time I like to write poetry and short stories.

We desperately need PRAYER, & help financially. Our family is trying to obtain a barrier free home in Brandon, Florida for the children. Not knowing how long we have with Kody makes time of the essence in getting the home.

If you'd like to learn more about our family & about our son's, Kody, disorder , visit:

www.champagnesurge.org