Please take a moment to introduce yourself to the community. Everyone here has something to share about Myotubular Myopathy. For the discussion boards, we ask that you keep your full name and location private.
hi there, i work with the careplace team. i think careplace is awesome. i hope it will really help people to share, support eachother and learn. we can all use support and understanding and it is so important for all of us who have experienced difficulties to have a safe and informative forum in which to do so. thanks for visiting - it is really rewarding for all of us to see people reaching out to eachother - it is what careplace is all about.
Life is about health, family and friends, but sometimes its hard to keep focus on what is most important
Hi, my name is Abbie and I am here because my daughter, Kaylee, now 18 months, was born with Myotubular Myopathy. So far she has battled and beaten the odds. She is doing well at the moment and I thought i would join this group to find any more information and friends possible.
We have a 14 year old son with X-linked myotubular myopathy, would like to support, advice others.
My granddaughter Kaylee was born November 29,2006 and diagnosed with Myotubular Myopathy. I am here to learn anything I can about MTM and anything that will help with care of Kaylee.
A Pediatrician working in Pediatric Pulmonology and Critical Care Medicine in a Medical Center at Taiwan, would like to learn and share the experiences with related diseases that ill the children.
Hello
My name is Toni - my father and I have Dominant Centronuclear Myopathy.
Hi, In Jan. 1982 I had a little boy put on a ventilator at birth soon after trach/ Gtube. He was diagnois with myotubular myopathy. He passed away in 1988. At that time we knew little about his illness. I wish to connect to others’ who face the same challenges.
Hi
My name is Darlene. I have 2 grandsons with XLMTM. Kyle is 5 years old and Connor is 19 months old. We live in Maryland. We want to find out how to keep the boys healthy and find a cure for this disease. Would like to talk with other families with the same thing.
I have myotubular myopathy all my life and I am 66 years young and I would like to correspond with adults with the same condition. What treatment you are on, and what you do to keep mobile.
My son, Nathaniel, was born in July 2000. He underwent 7 surgeries before we got a diagnosis of X-linked MTM when he was 2 months old. He came home on oxygen at that time but we were told to expect things to quickly get worse. Because of the surgery to place the feeding tube there was extra scar tissue that wrapped around his bowels. The doctors said it was the worse bowel infarction they had ever seen. So at Childrens Medical Center Dallas, on October 26th, 1 day shy of 3 months old he passed away. I still don’t know alot about the disorder and I would like to help out any way I can. Since then I have had a beautiful daughter and my tubes tied. But now I wonder how this disorder will effect her life. Nathaniel was the first case of MTM in our family of mostly women.
Maybe more info. My son was born 11-8-1985. Had mytobular myopathy.
Hello my name is Liz. My son Chaz 3 years 2 months has XLMTM. He is a wonderful little boy. I am here to learn and chat with other parents of children with MTM.
Hi, I am Isis, mother of Gabriel Emilio, from LA/ Rio de Janeiro. We’ve been “stuck” in Rio since the birth of my twins, Gabriel and HannaH. Gabriel has XLMTM and we are desperate for a geneticist… for someone here to “translate” all that is going on… We’ve found a LOT of support on the yahoo group. And lets expand to this new group now!
id like to talk to other mums who have children with mtm i have 3 boys 2 have suspeacted mtm ages 4 and 2
I am a 34yo male with CNM.
I’m a parent of a 10 yr-old boy with MTM. I want to connect with other parents as much as possible.