Friedrich's Ataxia: my step-son has it and it is bad. Has anyone ever

[babylonsister]

heard of this?

[babylonsister]

1. His mind is great, he just had his third child, but he has just

changed his car to work with hand controls, because his feet are failing him. :( I remember this kid when he was 9 years old, and so active!

[Viva_La_Revolution]

4. How old is he?

Isn't the age of onset really young?

I hope he's bearing up ok, it's a tough one to deal with. :(

[babylonsister]

6. My Scotty is about 34-6? And no, the age of onset for him

or perhaps for us was 24ish (when we KNEW something was really wrong, but it was a lot earlier for him). It's now 10 years later, 2 more kids, and he's definitely getting worse.
Stem cell research might save his life.
As for Freidrich's, onset is not young. When he finally found out what ailed him, it was a half gene from each (divorced/lesbian/remarried) parent that made it happen. There's another 'child' involved who has no symptoms of Friedrichs.

[Viva_La_Revolution]

10. My memory ain't what it used to be...

I thought the age of onset was 5-18.

Maybe he had symptoms then, and just didn't realize it was serious?

my google search turned this up... just a basic description.
http://www.mda.org.au/specific/mdafa.html

[babylonsister]

11. Yes, we thought he was athletic in his youth (he was on a soccer

team), but he got gawky in his teens. He also went back to New England and his mom, so we didn't see him for years. It took awhile, but I think he must have known there was a problem, perhaps not identifiable.

[MADem]

2. I've never heard of it before this

http://www.mda.org.au/specific/mdafa.html

The above links to a fact sheet with some basic information. Much of it I imagine you already know. No cure yet, slowly progressive, remission can occur, though rarely, and they are doing research to determine the cause. This sounds like something that stem cell therapy could help down the line, if they ever get to the point where serious research in that area is done.

[babylonsister]

3. Yes, stem cell therapy could save him, but it

probably won't with this mal-admin. :-(

[MADem]

7. California is doing their own, as are some private entities

A little federal backing would help, but they are pushing forward despite the Monkey's cruel stance on the issue.

[MissMarple]

5. Big hug, sweetheart.

That is what I can offer. Big hug for you, your son and his family. :grouphug:

God bless.

[babylonsister]

8. Thanks, MissMarple. To think

how much this man has accomplished with his disability is awesome! He is loved at work and at home (obviously:eyes: and his Valentines gift to the wife was a vasectomy!)
I make light, but this entire family has a very big hurtle to jump, as we do, especially
when stem cell research isn't on the horizon.

[Igel]

9. I'm fairly sure that a woman in the church I used to

attend suffered from it.

We'd either meet at her place, or haul her to services. By the time I met her, she was, on a good day, able to move her hands in the direction she wanted to point; otherwise, she could sort of talk, and gesture with her eyes; it was hard for me to understand her. But over the next few years, talking became pretty much impossible for her.

It was really, really bad, but that's an understatement.

My sympathies for the guy.

[Traveling_Home]

12. MDA

I'm pretty sure that Friedrich's Ataxia is one of the disoreder that fall under the perview of Muscular Dystrophy Association. Might want to check their resources too.

T