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Super Jesse

When Jesse was born, I figured my third child would be a sinch since I already had 9 years of parenting under my belt. What I was about to embark on was a whole different ball game! It was clear that things weren't going the way I would expect when Jesse reached 6 months old and could not support his trunk in an upright possition. By 8 months, he got neumonia and shortly after that, we were going to Stanford to investigate several issues, some of which I'm not sure are even linked to CMT. However, it started our journey to looking closer at what was really going on with my pecious son. Neurologists at Stanford suggested a few invasive tests such as muscle biopsy, but I resisted. A diagnosis was not important to me at the time. When he neared 3 years old, for insurance purposes, I needed a diagnosis so that we couold continue with the PT and OT we were getting. Our therapist referred us to Forbes Norris ALS clinic in San Fran. It was there that they performed an impromtu nerve conduction test and followed up quickly with a genetic test to reveal that my son had a spontaneous genetic mutation of PMP22. Now we had a name which helps us with financial coverage of his needs, but the support and flow of ideas for maximizing autonomy were in place from day one...and so we all just continued onward and upward. Jesse is 4 years old now. We use a supportive neoprean suit called Theratogs (we call it his "super suit"). This helps to hold his trunck a little more stable. He also uses a device called a Kid Walk. It is a walking wheelchair that allows him to play among others with little assistance. Within our small mountain community, he is becoming recognized where we go to local parks or stores, or at my other children's schools. I am trying to get an early start on teaching our local community about Jesse and hopefully about CMT. We hope to raise awareness of the condition and to also lower the walls that are so often placed between people with "challenges" and others. With the amazing siblings he has and therapists and the trust and belief that he can do anything, Jesse has already come so far! He has NEVER been told that there was something "wrong" with him. When asked why he uses the Kid Walk, we simply explain that his muscles work differently than theirs do, and he needs a little help with walking. Jesse accepts that answer as well and has every intention to continue to be his own most powerful driving force toward success, however it may look! Jesse is deffinately my hero!!