Raelyn's fight against SMA

This is the beautiful Raelyn! She is 9 months old and full of love and smilies! She was diagnosed at 4 months old with SMA (Spinal Muscular Atrophy) Type 1 (the most devastating type). This is a genetic condition that effects the way her nerves speak to her muscles, which results in the deterioration of all of her muscles. She is not able to sit up by herself, hold her head up by herself and will never be able to walk. Her breathing is also severely effected by this muscle weakness. She has already lost her ability to swallow and is on a feeding tube. We need another blood test done, for some reason her insurance will not cover, to determine the severity of her condition and to give us an estimated prognosis. SMA is a terminal illness with no known treatment or cure.  All we can hope to do is keep her as comfortable as possible for whatever time we have with her. It's a struggle to get her around the house, because of her condition she needs to remain laying flat majority of the time. There is are mobility systems available but are just way to out of our price range and insurance also will not cover. Along with mobility there are many other aspects of Raelyn's life that require creative adaptiveness because SMA is so rare.  SMA families often have to build and creaet unique "contraptions" to allow them to experience life as close to normal as we can. We would like to build a special swing set with a special swing bed so she can enjoy the beauty of the outdoors and still be comfy :) We refuse to allow her to live her life and not get as much out of it as possible. With some help we can make this all possible! And maybe even be financially able to build theses things for other SMA families we know!