BENEFITING: CURE CMD
My daughter Izzie has Ullrich Congenital Muscular Dystrophy, which translates to a collagen VI deficiency. She no longer has the ability to stand on her own or walk. She probably will not gain that ability back. We have to help her with everyday normal tasks, dressing, going potty, going from one place to another, etc. She has to wear leg braces at night because the tendons on her ankles are shortening and we are trying to stretch them without having to do surgery. She has a mild case of scoliosis, but someday she will need surgery to have her back straightened out. We hope later rather than sooner. She will eventually have to have a machine to assist with her breathing at night, because of her type of MD, she does not have the ability to expel the bad gases and could suffocate in her sleep. I tell you all this not for your pity, pity never helped anyone. I tell you this, because this is our life, her life. I tell you this so you understand why I am so desperate to raise money for Cure CMD. As a mother I want nothing but the best for my children and there is only so much I can do for her. I pray for a treatment, for a cure, for anything to help her. So please help. Thank you.