My Story

This is our son, Kody .  In 2003 he was diagnosed with Friedreich's Ataxia.  We keep this site as well as a blog: www.lisachampagne-miner.blogspot.com  Please take a moment to check out the blog as well as www.fortheloveofkody.blogspot.com 

These are both other ways to keep up with Kody and with our family.



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.  Current project we are working on is getting funding together to purchase a barrier free pool home in Florida .. if you would like to donate please do so through www.paypal.com .. our email address for that is champagnelisa78@hotmail.com And please pass this along to help in our quest to make this all possible.

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Lisa Miner posted a new journal entry, "Whew Over A Year??? Sry Everyone".

Life has been crazy busy since the last time we wrote in this journal.  We moved to GA in the end of June 2013 and got a new puppy (Sadie) and are now working on ... Read more

Lisa Miner added a new photo.

Lisa Miner posted a new journal entry, "Appointment Update".

Kody had an appointment with Dr. McKenna this morning at 11am.  It has been six months since the last time he was seen and his heart condition has progressed.  The ... Read more

Lisa Miner posted a new journal entry, "Time Has Come For A Heart Check Up".

Tomorrow at 11am we are going to be at the hospital with Kody for a Cardiology visit with Doc McKenna.  It has been six months since his last visit and so we are going ... Read more

Lisa Miner posted a new journal entry.

Doctor McKenna from SJCH recommended an Orthopedic Surgeon that resided next door to his practice for an evaluation. Let me first say I did like the way this doctor was. ... Read more

Lisa Miner posted a new journal entry.

Sorry it's been so long since I last posted.  Between the blogs and facebook it has been me slacking.  Kody recently had a cardiology appointment in July.  The chambers ... Read more

Lisa Miner posted a new journal entry, "HAPPY BIRTHDAY".

15 years ago today is when Kody David Richard Champagne was put into my arms for the very first time.  He was born @ 02:17am at Oakwood Hospital in Dearborn MI.  He had ... Read more

Lisa Miner posted a new journal entry.

We had a visit with the cardiologist at St Josephs this morning at 9:30am.  The routine test were done on him.  He is all of 72.6 lbs and about 4ft8in.  The doctor ... Read more

Lisa Miner posted a new journal entry.

The cardiologist visit was rescheduled for 12/14 @ 9:30am.  Thanksgiving went well and today is back to the regular school schedule.  Not that he wants to deal with ... Read more

Lisa Miner posted a new journal entry.

The cardiologist visit was rescheduled for 12/14 @ 9:30am.  Thanksgiving went well and today is back to the regular school schedule.  Not that he wants to deal with ... Read more

Lisa Miner posted a new journal entry.

This past Thursday we went to the homebound office to start up the IEP for Kody's schooling.  This means Kody was up @ 7:40am to get ready to go to this.  He wasn't real ... Read more

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