Moms with children with Muscular Dystrophy

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Karley - posted on 06/24/2015

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We are currenting in the diagnosing stage of md with our 2 year od and oh man its been hard. I cry every single day. He's partially missing the dmd gene and his ck levels are high. We are meeting with a genetic counselor on august 25. I'm trying to stay hopeful but with him having the marker and high ck levels, its not looking good. Im a young mom, im 23 and this is my first baby. I don't know anybody with this disease. He's been seeing speech and pt since around 1 yrs old. He has done everything late. He didnt crawl until his first birthday and he didnt walk until 19 months. He was also diagnosed with autism 3 months ago, but honestly i dont even care about that. This md prognosis is breaking my heart. Yesterday was pretty upsetting, he stubbled and fell 3 times while running. His father is taking it a lot better than me and i try to hide my crying because i dont want him to get upset as well, one of us needs to be strong and its not me.

Val - posted on 10/29/2012

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My son is 18 yrs old and has Duchenne Muscular Dystrophy. Please contact me if you have a son or daughter around the same age as my son with the same/similar condition, Thank you.

Christina - posted on 12/29/2011

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My oldest was diagnosed with Becker's Muscular Dystrophy in May 2011. It has been a long road, and will not get easier or shorter, but loving him is enough to make the effort worth it. HE currently does PT once a week and we have him stretch often, along with doing Tae Kwon Do and other sports (seasonal).

Nelly - posted on 06/06/2010

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I have a son that we adopted that has RAD, reactive attachment disorder, we have worked with him since his adoption, and is doing well now, so like you, if i can be of any help to someone with a child with RAD, I will be more than happy to tell you how we got him through school, and working!

Jill - posted on 06/06/2010

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my 5 year old has duchenne muscular dystrophy.i was only told on 11 may last month so its all new to me xx

Nelly - posted on 06/03/2010

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I dont have a child with muscular dystrophy, but i do know keep exersicing all the muscles, repeatately, but i have an adopted son with reactive attachment disorder,(RAD) and giving them back is not an option, you wanted the child, so if you would of given birth to a child that has special needs, you do what you have to to help that child, so do the same for the adoptive one, it is now your responsibility, you are dealing with a child that did not ask for his or her disability.Do the best you can, their is help out their, look for it.

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