Collagen 6 Myopathy

Courtney - posted on 09/15/2014 ( 2 moms have responded )

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Hey everyone my daughter Italeigh is 2 she will be 3 in December. Her doctors diagnosed her with Collagen 6 Myopathy her doctors also said that the gene that she has is so unique and different that they never seen it in this whole entire world. With that they couldn't tell us what type of Collagen she had cause they never seen it before. So the life she would have they couldn't tell us but that Collagen 6 Myopathy causes heart problems respitory problems and cirrhos of the back. My baby is not walking right now and it hurts because no one wants to see their child cry because they wanna run and play like her older sister and kids. Le le gets PT two times a week so her legs can get stronger so that she can walk. Please pray for my baby please and if anyone of you can you please donate to my baby so that she is able to get the things she needs to help support her body and to help her walk. Her link is!!! http://www.gofundme.com/My-Little-Angel-...

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Jennifer - posted on 11/05/2014

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My son has this muscle disease. He's 6 years old, has some physical limitations (not a fast runner, hard to get up stairs easily), but we do see progress over longer periods of time. We don't know exactly what's to come for him. It could get more difficult as his body grows and the muscles have a harder time supporting him. So far, he's a happy, healthy kid ....doing well in kindergarten, high energy, and doesn't really see his physical challenges get in the way.

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