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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. 

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Feeling Of Real Change

I think I do not really know how much things have changed since his diagnosis came to us 12 years ago.  Outings take more planning especially with a two story rental home.  And even with the best of planning it is still difficult. We went to the movies tonight and due to some misdirection by the staff we ended up getting into the theatre right before the movie started which meant majority of the good seats were taken.  Thankfully one of the movie goers offered us his seat to be able to allow us all to sit together.  After the movie we went to Panda Express which is one of our spots.  Kody has some uncoordination going on and does not quite realize it.  He gets angry if we try to assist him to figure things out.  Ultimately we ended up packing up the rest of his food and just going home. 

I hate Friedreich's Ataxia and I hate what it has done to our son.  I wish I could make it just all go away.