Charlie was born very floppy - we was unsure what was causing this. He spent 3 weeks in intensive care with feeding tube and cpap to help him breath, the doctors didn’t know what was causing the floppyness and did lots of tests. They all came back negative, then we had a special consultant come and see him and he said it could be congenital myotonic dystrophy but was unsure until he had him tested. He tested it and 3 months later we had a positive result.
When we got him home he had progressed amazingly. He is drinking from a bottle, is able to roll over and play with his big sister, he has worked so hard to get to this point but still unable to do a lot of things the children his age could do. We spent a lot of time in and out of hospital for appointments. He suffers a lot with chest infections due to weak muscles. We have lots of professionals involved in Charlie like pyhsio, oT, salt, and lots of other people.
He is such a happy little boy who loves to give high fives to everyone he sees.