13 year old Harry lives in Chelmsford with his mum and two younger sisters, Iris and Florence. In 2010 Harry was diagnosed with Leigh’s Syndrome, a type of Mitochondrial Disease. The family have been visiting Little Havens for respite breaks since 2014.
Harry’s mum Lucy said, “At the time of being referred to Little Havens, I couldn’t get my head around the fact that going to a hospice was going to be a positive experience – how wrong I was! It’s a place that is always filled with so much love, laughter and fun, even though every family there is facing the fact that there is no cure for their child’s illness.
“Whenever we visit the hospice, we all have such an amazing time. For me, Little Havens is to spend quality time with my children without the stresses and strains that having a child with complex needs brings.
“Sometimes in the outside world, it can feel isolating. Having a child with very complex needs, you can feel like you are standing on the outside looking in. But going to Little Havens gives our family a space to just ‘be’, where everyone understands and you don’t have to explain anything.
“Harry’s two sisters, Iris and Florence, don’t see the hospice as a scary place, it’s always been part of their life. Even though they are getting older they still talk about Little Havens being such a fun place for us all to go to. They proudly tell their friends about Little Havens.
“Understandably I feel protective over Harry as he relies on me for everything but at the same time I have to realise he is a teenager and he might want some space away from his Mum. So Little Havens gives him something that’s just for him.
“Harry is literally the happiest boy I think you will ever meet. Without ever uttering a single word he has taught me more about myself and the world we live in. He has taught me what is important and what’s not.
“Being told your child has an incurable condition is devastating and life-changing but it has made me determined to make every day count and to make a difference.”
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Published in 2022
Lucy, Harry's Mum
Having a child with very complex needs you can feel like you are standing on the outside looking in. But going to Little Havens gives our family a space to just ‘be’.