Austin's Story.

 
 

Austin is a loving 3 year old boy with the best sense of humor! He developed typically and hit all of his milestones until about 12 months old. On his first birthday he was just starting to walk, taking 6 or 7 steps at a time. Over the next few months, he reverted back to crawling and needing help to stand or take steps. At 15 months we were referred to our first neurologist. It took almost 18 months of blood work, X-rays, MRI, spinal tap and genetic testing to get a diagnosis, the longest 18 months of our lives. I remember our first physical therapy evaluation when he was 18 months old, the PT told us, "I think this may be a parent's worst nightmare: Cerebral Palsy." First of all, no, let’s not preface with the word nightmare. Second, I'd actually prefer for it to be CP now that it's not. Reason being, while a lot of the physical challenges are similar, what he has, Hereditary Spastic Paraparesis (HSP), is a progressive disease that continues to worsen over time, whereas Cerebral Palsy stays stagnant.  Over the last couple of years we have googled ourselves crazy and felt every possible emotion. Devastated that he may never walk, guilt that we have it easy compared to others, mourning for the vision we had of his childhood, but so very grateful that this disease will most likely not effect his lifespan or his cognitive abilities. He is an incredible kid and we are lucky he is ours.

 
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