At birth Charlie seemed to be a perfectly healthy baby but at his 6 week check it became apparent something was wrong. The local hospital couldn't find anything wrong and eventually we were sent to GOSH where they diagnosed Charlie with SMA1. We had not even heard of it yet alone new we were carriers and so we were given information, told about JTSMA and our local Childrens Hospice.
At first we were reluctant; so our baby couldn't move but he was interactive and beautiful and we refused to accept there was nothing we could do. However the time came when Charlie's condition rapidly declined and he was rushed to hospital and resuscitated. Charlie now needed constant around the clock clinical care so we took the decision to use our local Keech childrens hospice. Their facilities allowed us to stay together as a family, we felt supported and safe. It was a happy place, about the quality of time left and we met other families in the same position.
We have lovely memories we shall treasure forever. Charlie was the joy in our lives and we would have done anything and given everything for a different outcome - but it wasn't to be. We went through the worst, traumatic time trying to find out what was wrong with our son, but we feel proud that we nursed Charlie right up until he died in our arms at just under 6 months old and blessed to have been his parents if only for a short time.
"THE BUTTERFLY COUNTS NOT MONTHS BUT MOMENTS AND HAS TIME ENOUGH".
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