New to FA.

[5027442503]

Hi. We found out in June our 11 year old has FA. Her balance has gotten worse. I am interested in weighted vest. Ahe does archway andnhis yeat its rough.

[BlanketTime1]

welcome. i'm not familiar with weighted vests. are you taking her to physio? perhaps they can give you some ideas and information. stay strong.

[swtb]

Hi & Welcome to this site. There is so much information here. I'm not familiar with FA, but I did a you tube search and saw that vests were used for balance improvement. Keep looking for posts by sunvox here. He is a treasure trove of important info re. ataxia. Better to get started early in the diagnosis. There are many things you can do for your 11 yr. old. Stay strong and positive.

[simon111 in reply to swtb]

Hi,my 15 year old son was diagnosed 3 years ago,devastating,we are still coming to terms with it

I got the balance vest from USA for him, to be honest it did help a little but he now refuses to wear it

If you are interested,you can have for your daughter ,it's size is small. I hope I'm not offending you but pointless paying out Good money ,after delivery etc it cost just over £200 .

Also there is a parent group for friedrichs ataxia,which has been invaluable to me . I will send link shortly

You can get advice from parents who have children now in their 40s , who have been there done that .

I hope you join as you must be totally devastated and this group can help you deal with all your questions and support you

Take care

Mary

[simon111]

faparents.org/fapg/Members/...

Sorry not very good at copying links ..hope it works