Re: [Myotubular_Myopathy] Care plan now done all ready to send
- I would like a copy of marconis care plan. You can email it to me directly if you wish. Thank you.Liz
Ahhh...imagining that irresistible "new car" smell?
Check out new cars at Yahoo! Autos.
- Dear Rachel,
I am a mother of 2 months-old baby. My son was born with
diffuculties of breathing and swallowing. Also because he was floppy
at birth they did a muscle biopsy to tell it was myotubular
myopathy. Very recently the genetic testing also proved the
diagnosis. Now we know that our son-Ýlker is suffering from X-linked
MTM. I know survival really depends on how severe a case the baby
has and how much help/support the medical system can provide.
Because of the rareness of this disorder we don't get enough
professional support here in our country. I am always being told
that that there is no cure or treatment for X-linked MTM. So we will
really need assistance from the ones who has experienced or suffered
from this disease. Following an advice I joined this e-group. So I
was scanning through the messages and I saw your message about care
plan. If you don't mind I would like to have marconis care plan,
maybe it could help. Thanks,
--- In Myotubular_Myopathy@yahoogroups.com, "rachel_wrigley"
> dose anyone want a copy of marconis care paln just to give you all
> idea on what to put on yours