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Soidgeges
09:55 AM on July 06, 2011
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Wempouppy
04:56 PM on June 26, 2011
There is a tone that continues on calling me, Arthur.
Downward this highway within Brideport, that's wherever I'll forever be. Each end I manage, I find a new companion. Can't keep on for long, only twirl around then I'm gone once more.
Maybe tomorrow, I'll fancy to relax, Pending tomorrow, I'll just continue moving on.
Everything began as this central character, Mckinley, awakened at home a troubled thicket. It was the tenth moment the thing had happened. Feeling awfully worried, Mckinley grabbed 1 potato, believing it would make him feel well again (on the contrary as common, it did not).
Ever so extemperaneously, the man realized that his beloved diary appears to be lost! Right away he rang his ex- cellmate, Chas. Bounce house rental in phoenix is on occasion a little... selfish. Mckinley rang anyway, for the circumstances has been urgent.
Downward this highway within Brideport, that's wherever I'll forever be. Each end I manage, I find a new companion. Can't keep on for long, only twirl around then I'm gone once more.
Maybe tomorrow, I'll fancy to relax, Pending tomorrow, I'll just continue moving on.
Everything began as this central character, Mckinley, awakened at home a troubled thicket. It was the tenth moment the thing had happened. Feeling awfully worried, Mckinley grabbed 1 potato, believing it would make him feel well again (on the contrary as common, it did not).
Ever so extemperaneously, the man realized that his beloved diary appears to be lost! Right away he rang his ex- cellmate, Chas. Bounce house rental in phoenix is on occasion a little... selfish. Mckinley rang anyway, for the circumstances has been urgent.
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melody raddatz
07:50 AM on November 29, 2010
To the mom who has a million questions....I have time to answer a million questions with no doubt a million answers 
I have had 2 sons with MTM/CNM spaning over 20 years! Back in 91 there were only 2 kids that we knew of in Illinois with this disease. My youngest is now 15, writes for a local paper and graduated in the top percent of his 8th grade class. Where his legs can't take him, his mind and personality surely has!! Write me!!! Pats-mom@hotmail.com!!! Ciao, Melody
I have had 2 sons with MTM/CNM spaning over 20 years! Back in 91 there were only 2 kids that we knew of in Illinois with this disease. My youngest is now 15, writes for a local paper and graduated in the top percent of his 8th grade class. Where his legs can't take him, his mind and personality surely has!! Write me!!! Pats-mom@hotmail.com!!! Ciao, Melody
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melody raddatz
07:45 AM on November 29, 2010
christy says...
my 5 month old son has mtm and i have a million questions. i am just hoping someone will have some kind of answers, elizabeth dechene sent me to this website. all the doctors i take my son to have no idea what to do. i feel so alone. i am located in va. i noticed some of you were also. hopefully i will get some kind of feedback. thank you and best wishes.
Hi Kris! Welcome! Looking forward to hearing more about your son, James.
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Kris Rennie
09:38 PM on November 05, 2010
My son James suffers from central nuclear myopathy. He is twenty one months old now and has been living at home with us since July. He like all of these kids with this disease is an amazing child who is always smiling.He has taught me so much in his short time here...like to cherish every moment you have with those you love and not to sewat the small stuff. I wish I was able to attend the conference on this disease but probablly can't. It would be great to meet fellow families dealing with or familiar with this disease. Hopefully I would be able to attend next time! I am glad sites like this one are out there as another voice for this disease.
Thanks
Thanks
Hi Christy,
Gld to meet you. Do you have Facebook? We have a very active support gtoup that welcomes you with open arms! I will send you a private email to get you connected. Glad to hear from you!
Gld to meet you. Do you have Facebook? We have a very active support gtoup that welcomes you with open arms! I will send you a private email to get you connected. Glad to hear from you!
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christy
10:39 PM on September 28, 2010
my 5 month old son has mtm and i have a million questions. i am just hoping someone will have some kind of answers, elizabeth dechene sent me to this website. all the doctors i take my son to have no idea what to do. i feel so alone. i am located in va. i noticed some of you were also. hopefully i will get some kind of feedback. thank you and best wishes.
Welcome! Keep looking for new updates and exciting changes to the website! It is currently under construction to improve the information give and the overall functionality of the site!
Hi,
its been a fantastic website i`ve seen.
It`s an wonderful work by mtm-cnm.com team!!
thanks and regards
its been a fantastic website i`ve seen.
It`s an wonderful work by mtm-cnm.com team!!
thanks and regards
I really cant express how happy i am to find your site.
Thank you
Thank you
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Kathy Moore
02:21 PM on October 20, 2009
Just discovered your site and found it encouraging and ensightful for all families dealing with an MTM family member. My son was born in 1977 with this and it wasn't until after his birth that I discovered I carried it. Although my son had an extremely severe form of MTM, with constant support from a ventilator he lived to be twenty years old and probably could have lived longer had he not succumbed to a respiratory illness. Regardless of when he would pass though we lived every single day of his life to the fullest, focusing not on quantity but rather, quality. Even 12+ years since his death, he remains alive in my heart and rarely a day goes by that I don't think of him and smile. We were recently blessed with a healthy grandson who I'm confident has a guardian angel in his uncle Bill.
Focus not on what your child can't do but what they can, focus not on how long you'll be blessed with their presence, instead make every moment count and enjoy all of the little moments you have with them. Focus on the quality of their lives.
Focus not on what your child can't do but what they can, focus not on how long you'll be blessed with their presence, instead make every moment count and enjoy all of the little moments you have with them. Focus on the quality of their lives.
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Joel and Barb Forsberb
11:41 AM on April 03, 2009
We know Trent and his wonderful family...we want to help however we can. So Happy to find out that help is available for these special children.
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dkelso5
12:03 AM on September 07, 2008
The video is awesome - Ben, you are toooooo cute!!! Hope this reaches many people in order that they attend this great conference! Great job, Connie.
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mtm-cnm
03:29 PM on August 21, 2008
Hi. Thanks for the wonderful site and all your work for the conference! You're all fantastic!
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