At 10 months old our beautiful daughter Rosa Mae was diagnosed with Canavans Disease, a rare genetic leukodystrophy. We were told the disease was progressive; there is no cure and no treatment, children with Rosa’s condition have very short lives.
On that day the ground fell from under us. For quite a long time we were a lost mess of sadness and confusion. It was the biggest and hardest shock and nothing felt real. Luckily for us, Rosa was a bright little star in our lives, she reminded us then as she still does now that every day is a gift.
Very slowly something amazing started to happen, we started to meet and connect with a world of wonderful, kind, caring, generous people. They helped us find our feet in an unfamiliar world. Little Bridge House, which happened to be up the road from where we lived at the time, offered us comfort and space to be a family.
Initially we were apprehensive and even resistant; we didn’t understand that it wasn’t about dying, but living and supporting us all throughout Rosa’s life. Children’s Hospice South West, initially Little Bridge House and now Little Harbour, have become a vital part of the wonderful patchwork of support that makes up our lives.
Seven years on we try to live for every day, never forgetting how precious life is. Rosa continues to astound and inspire us with her sunny outlook and mischievous giggle.
We all look forward to our stays at Little Harbour; the kids could almost burst with excitement as they know it is almost always non-stop fun. We know that we will be able to step back a little, something which is usually fairly impossible. We also know that life will not always be this way and we are so grateful that the hospice will be there to support us on our journey.