Re: [Myotubular_Myopathy] Would like to talk with others with myotubular myop...
- That is the kind that my son and I have. I am 50 and my son 26. I am
using a scooter but my son is still able to walk just has trouble with
stairs. Looking forward to hearing from you either on group or off.
- --- In Myotubular_Myopathy@y..., mlhayes99@a... wrote:
> MY 6 YEAR OLD NEPHEW HAS ONE OF THE RAREST FORMS KNOWN AS "X-LINKEDMy son is 4 and has the x-linked form of Myotubular Myopathy. He is
> MYOTUBULAR MYOPATHY"
also part of a study group being conducted by Gail Herman a geneticist
from Ohio State university. We also are part of the Myotubular
Myopathy resource group which is rub by the Scoggins. Please let me
know if you want information about anything specific. My son has a
traech and uses a pulmonetics 950 vent at night. He goes to school
and is very happy and very smart. He gets many therapies and he gets
low level electric stimulation at night from a TES machine. You can
reach me at my e-mail address whic is Robert.shapiro@....