Hi everyone,
This is my first post. Please bare with me this is a long post.
My son is going to be 2 next month and he isn’t walking. He has been seeing a Pead since he was one, since he hasn’t made massive progress in his gross motor skills he’s having to have a series of blood test, the ones we’ve had so far have came back normal. We are now waiting on his gentetic blood test and his creatine kinase. I had no idea what the last test was and when I googled it I was shocked that it was for muscular dystrophy. My heart has been heavy ever since and I’m terrified that my son may have this, as the doctor said that was he was most interested in. My son is a bum shuffler he can weight bare, he kneels and lifts up on to one leg as if he was proposing 😂 he can pull himself up but this is very very rare. Every other milestone is on point. He talks an awful lot, he’s such a happy little boy. He’s making friends at his nursery & his understanding is brilliant it’s just his lack of walking that’s holding him back. He really just doesn’t seem interested in doing it. Enitially I wasn’t to fussed and just thought he’s being “lazy” and will get there when he’s ready, but now seeing what this CK test means I feel absolutely terrified and I’m thinking the worst. Not for myself but for him, I’ve read that this disease will put a child in a wheel chair between 9-13 year old and they are lucky to be alive by the time their 30. I can’t bare to think that this is how his life could turn out. Is there anyone out there who has been or is going through this? Please tell me what I need to expect, am I over reacting? I’m so so scared I can’t sleep or eat. I never thought I’d have to go through something like this as a parent.
Thank you for reading xx