10yr old Son diagnosed with Friedreichs Ataxia and moderate HCM

[Corbintlg]

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.

[simon111]

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

[simon111 in reply to simon111]

FARA

[Corbintlg in reply to simon111]

Thanks for the encouragement. We definately need it right now. Our whole world has crumbled. Does your son have heart issues yet?

[simon111]

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

[simon111]

fafysio.wordpress.com/

Check this out

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