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 didnâ€™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.