Living in Colorado/USA and our 10yr old son about to be diagnosed with FA and HCM. We are only waiting for genetic test to come back to confirm what doctors already know. We are devastated. Now begins our journey.
10yr old Son diagnosed with Friedreichs Ataxia a... - Ataxia UK
10yr old Son diagnosed with Friedreichs Ataxia and moderate HCM
Written by
Corbintlg
To view profiles and participate in discussions please or .
Read more about...
5 Replies
•
Hi corbingtig
I am so sorry to hear this my 14 year old son was diagnosed 3 years ago
It is utterly devastating especially in first few months coming to terms with,stay strong!
Their is worldwide parents group that is essential for all your queries now and in the future. I have found it invaluable and I would not cope without it
You join via Friedrich Ataxia Research Alliance FAR
Please do so asap
Simon
Yes he has mild cardiomytopthy
There is quite a lot of research ongoing at present, a lot of it is very promising
There is moderate results from thiamine ,B1which you will find out from parents using it including myself
COQ10 does help with the heart and fatigue
I will try to send you some information
Not what you're looking for?
You may also like...
New to Friedreich's Ataxia
new here..my nearly 13 yo son has just been diagnosed with FA. He was diagnosed as dyspraxic 5...
64 with Friedreich's Ataxia
a week. Does anyone have any other suggestions about how I can support him? Thanks
Cerebellar Ataxia of my 3 Year old son
Hello. My son was diagnosed with genetic cerebellar ataxia. I want to create a community for people...
Newley diagnosed with cerebral ataxia
I can't handle this. I was diagnosed a year ago and am finding it very hard to accept that I can't...
2 year old toddler with Ataxia
symptoms? What diagnosis was made for them? She is due to have her mri but I am dead worried about...