2014 was one of the hardest years for Alexander as he learned that life as he knew it, with a progressive decline in his motor skills, would continue to decline. After many years of mom saying, "something's not right", she finally found the avenue that took us down a very long journey, one we've just begun.
After many appointments with physical and occupational therapists , a pediatrician, neurologist, cardiologist, orthopedist and many trips back and forth to Children's Hospital in New Orleans, He was diagnosed with Friedreichs Ataxia, a rare Muscular Dystrophy. Alexander's body does not produce energy like it should. He gets tired easy and has been restrained from physical activity due to a heart condition, hypertrophic cardiomyopathy, that often accompanies FA. He also has scoliosis and many other ailments. At current Alexander awaits the arrival of his back brace which we hope will allow him to finish growing before requiring corrective back surgery.
Though we know this is life for Alexander, we would like to allow him to live it fully before he is confined to a wheelchair. We would like to promote FA awareness while allowing him to be part of a community that enjoys the beauty of outdoors. His first 10K was done in Baton Rouge, Louisiana with part of his amazing support system. He enjoyed it so much that he is now registered for a for other upcoming runs. On March 21, 2015 we completed a 5K with his supporters, including grandma at age 65. In order to do this he will need a jogger and we hope to be able to give him that. Alexander is very motivated to cross many more finish lines as he deals with the progression of FA.
Alexander is looking to give the hope of inclusion and acceptance to others that may be stuck thinking that they are unable to participate in run/walks. He will help spread awareness of FA and other limiting conditions at the same time showing that there are Angels (Ainsleys Angels) that help us cross the finish line
#TogetherWeShall, #Ainsleys Angels, #FA Awareness,
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