What can I say, she’s always smiling even when she is not having a good day… After being told my daughter had one fatal disease and then later told she had a different diagnosis of another disease I found myself feeling helpless and devastatingly upset, but to see Maddi how strong she has been and how she copes with living with a progressive disease brings me back to reality of what a great girl she is.
Yes she does question “why me?” Especially when she was going through life enjoying herself doing as many activities as she could, one which was ice skating having passed many levels she thoroughly enjoyed it but she was unable to carry on once this disease process started, it caused great sadness for her. She has now taken on a new interest in horse riding as this was strongly recommended by Great Ormond Street Hospital as it helps to keep her core strength without causing too much strain on her legs.
Today she is working as hard as she can to keep her strength up and trying to be as physically fit as much as she can manage. As time has gone on we have had to up the amount of PT sessions along with other therapies including weekly sports massage. Hopefully while we wait for a cure it will help to hold the progression back.