Bella, age 9, has been diagnosed with severe Fascioscapulohumeral Muscular Dystrophy. Bella’s family has kindly shared their experience with us.
Ellie, Bella’s mum:
I spent Bella’s early years trying to find out what was wrong with her; working out how to get the best services for her and worrying about my other children and how they were coping with everything. I felt completely weighed down and exhausted by the reality of having a young, disabled child. Tim and I never had any time to be alone as a couple together Bella’s condition is not treatable; it’s progressive so it’s only going to get worse and so will continue to have a huge impact on our family life. So I have to try and concentrate on the positive things – the important thing is to enjoy everything that Bella can do rather than spend too much time worrying about what she can’t do.
We have been with Noah’s Ark since 2010 and are so grateful for the support that we have received – whether it’s the time away that our other children have had doing special events with the siblings group or the time I get to spend at the Parent Groups. This time is really valuable to me as I can be with like-minded people who understand the pressures and strains that we are all under but who don’t judge me in any way. It’s helpful to know that I am not alone and that help is at hand.
With thanks to Ellie, Bella and family and Noah’s Ark Children’s Hospice for allowing us to reproduce this article here.