Hi Isabelle,

Sorry to hear about your daughters' diagnosis. The leading authority
on dysferlin deficiency in Australia (IMO) is Prof. Kathryn North, at
Children's Hospital at Westmead (Sydney). That might be a good place
for your neurologist to turn for more information.

I've changed your permission levels so that you will be able to post
freely from now on. (It's necessary to require approval for the first
post to avoid spam).

I also encourage you to go to the Jain Foundation site which has a lot
of information of dysferlin deficiency. www.jain-foundation.org

Best wishes,
Brad Williams