Re: Looking for mom of XLMTM non carrier
- In response to your email, My name is Melanie i don't seem to be a
carrie, My son James who died 2 1/2 years ago aged 11 months had a
comlete deletion of the exon 9 gene, they can not confirm whether or
not i am a carrier, so i live my life as a non carrier, am 4 months
pregnant with my second son who is free of the MTM1 x link condition.
If this helps at all i'm happy to help, I live South Australia. i can
send my number if you think that i'd be any help,
p.s my personal email address is angel.james@...
- In Myotubular_Myopathy@yahoogroups.com, "patsarah2006" <patsarah@...>
> Hi guys. I have recently been in contact with a mother who lost her
> at approximately 1 month of age. He had X-linked MTM. She is not amothers
> carrier. She is interested in speaking with other non-carrier
> who have lost a son. I wondered if you all new of anyone who mightbe
> willing to speak or email with her. Please contact me directly and
> include your phone number please. Thanks. Sarah