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In Honor of Kody

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Kody’s Story

This is our son, Kody .  In 2003 he was diagnosed with Friedreich's Ataxia.   I guess I should begin with the fact that I always deep down knew there was something not quite medically right with Kody. Most physicians I expressed this to thought I was just an overly worried mother. But I knew I wasn't. Its hard to explain. I had tried to get approval to take him to a specialist since he was a toddler....maybe 3 y/o. Finally when he was 7 y/o was fed up and told the physicians that I was demanding a referral. Kody was first referred to see a Orthopedic Specialist. (Because his main problem was his walking or as physicians say his gait was abnormal or ataxia as it's now referred to as.) That specialist thought Kody had Cerebal Palsy or CP for short. But he referred him to a Physical Medicine doctors to be sure. (I guess like a second opinion.) The PM doctor said that it wasn't CP but that it was something. He believe something neurological. So he referred us to Dr.Gyula Acsadi a neurologist who worked at Children's Hospital of Michigan. Well he knew right away what Kody probably had. So he ran genetic screening for Friedreich's Ataxia. 3 weeks later We got a positive diagnosis for FRDA. The date was 7/27/2003. And that is where everything began. 

Latest Journal Update

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It is Feb-2015.  Pretty amazing how quickly time passes us by in a blink of an eye.  Kody will be 19 in three months and has kept a relatively great attitude while dealing with the cards God has dealt him.  He loves to kick back and watch Law & Order: SVU and has a crush on the character Olivia.  I cannot blame her because she is a beautiful lady.  He was able to get a new manual chair which has a tilt feature and though he is still getting used to it .. he likes it.  The wheelchair clinic let him choose the color of the main frame and so he chose emerald green.  It just happens to match his birthstone which is cool.  Kody decided to discontinue school due to not being satisfied with how they were with communication.  We may or may not choose to move on to the GED depending on what he wants to do.  I am currently looking for a desk for his room for his laptop.  He loves to be able to chat with family and friends via Facebook.