Within the last couple of days I have connected with 2 parents who's children are recently diagnosed with Friedreich's Ataxia.  What makes them stand out is the fact that their children are 7 years old .... the same age as Kody was when he was diagnosed.  Them asking me for advice on things brought to the surface how I felt when we received the diagnosis for him.  One family had a couple family members previously having the diagnosis so they knew a bit more than a regular newbie.  But the other family was all new to it.  I gave some details to what has been the progression for Kody without going to far into detail.  This way they have room to ask questions when they are ready.  My biggest piece of advice though was to be honest with their children.  Yes the diagnosis is hard for an adult to handle but children are more adaptive.  From the moment I knew what he had I have made a point of talking to him periodically about it.  At first it was in terminology that a 7 year old could understand.  But we have made sure he knew the name of his disorder.  Some people may think it's harsh to burden a child with such information but giving him a reason why he was having a hard time walking or for the terrible cramping in his legs afterwards or the falls ..... it let him know we knew what was going on and would just take precautions to prevent what we could.


As I sit here I realize how much things have progressed with him and how different things are now.  3 years ago he was attending school instead of being home bound.  4 years ago he was able to spend the night at a friends house and goof off with his peers.  He was a social butterfly and has now become a wall flower.  At times uncomfortable in his own skin but being the trooper that he is .... he makes the best of things.  Lord knows if I could make things better I would.  He is such a handsome and intelligent young man.  His earthly body just doesn't do him justice.  Everyone who meets him falls for his big brown eyes and witty charm. He has been a ladies man since before he could talk.  

I would love nothing more then to be able to put him into school and allow him to around his peers.  Let him have the first year of high school the way it should be.  But with the progression of his heart he gets too easily fatigued to let him go back.  This year he should be the teenager who is nervous about entering into high school.  I should be worrying about why he is late for his curfew and having to filter phone calls from his friends.  


He knows what Friedreich's Ataxia is and he can see the affects of it on his body.  He's tired of seeing doctors but we make sure he sees them regularly for check ups.  I love him and wish they had some magic pill to make the FA go away and to give him back all that he has lost.  I'd give anything for that.