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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

Cardiology Visit

Yesterday Kody seen Dr. Fishbach.  They did basic vitals, EKG and an ECHO.  The EKG showed an inverted T wave which is common with his heart condition.  The ECHO showed the thickness has increased but the function is tolerating the damage.  The doctor said because Kody hasn't show a tolerance for beta blocker then he will not even ask about medications.  Concerns now include the thickness causing the superior and inferior vena cava closing which would cut off blood coming into or out of the heart.  Also, with the thickness it can cause a disruption of the electrical impulses of the heart which would cause irregular heart rates.  He had mention that in other cases he would recommend a defibrillator implanted but not with him.