Re: [Myotubular_Myopathy] Hello
- Toni, Hi. This is Amanda Hollingsworth, Jacob's mother. I am happy you found your way here. There are several adults with MTM in this group. I look forward to corresponding with you. I hope you are doing well.Take care, Amanda
inotesiuol <toni.abram1@...> wrote:
Just a note to introduce myself - my name is Toni and I have just
signed up here.
I recognise a couple of names here of people I have corresponded
with .... Jessica, Pat, I hope you are both well.
Also Sue Willis - I have been trying to get hold of you but when I
eventually came across your emails about a year after you sent them
(major computer problems / viruses / change of email address and
eventually a new computer), your email address no longer appeared to
work. I even tried to contact Ian Sutton but he said he had no
contact details for you.
I would still really like to talk to you and would also very much
like to print your story on my site if the offer is still open.
I had resigned myself to never catching up with you. I hope now we
will finally get around to chatting.
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- My daughter is pregnant and the father of the baby has a brother with this disease I was wondering if anyone could tell me where I could find some straight to the point info instead of all the medical jargon we have encountered in our searches.
Basically we would like to know what the likelyhood is of her child be affected by Myotubular myopathy?