harry's story

When seven-year-old Harry was 21 months old he was diagnosed with Leighs Syndrome, a type of Mitochondrial Disease, caused when there is a mutation to the mitochondrial part of the DNA. He is unable to walk or talk and has complex epilepsy. Shortly after his two younger sisters were born the family turned to Little Havens for help. 

Following Harry’s diagnosis in 2010, Harry, Lucy and her husband Stuart were referred to Little Havens. Despite coming to have a look around they decided they didn’t need the support. Their daughter Iris was born in 2011, followed by Florence in 2013. They managed well until Florence was around 8 months old but came back to Little Havens for another look around.

“It must be the same for everyone, you hear the word hospice and you just think of death. I don’t think we were ready. We didn’t have any other children at the time and we were just kind of coping with everything that was going on.

“We could see what the benefits of coming to Little Havens would be after having the girls - it would give us time to be able to spend with them, knowing that Harry was being well cared for. The girls are too young at the moment but as they get older they can go to the sibling support groups which we feel will be important for them.”

The family was staying at Little Havens during the installation of the Little Havens Yarnbomb in August 2014 and once it was taken down, Lucy made brooches out of the flowers and sold them to raise money for Little Havens.

In May 2016 Lucy took part in the Dirty Weekend Rat Race, a 13 mile race with 150 obstacles. She raised over £2,500 for Little Havens.

“At the moment we all see our visits to Little Havens as a little holiday. Before we came here we weren’t really getting a break. All of my time was taken up with looking after three young children and one who is pretty complex and quite severely disabled – it can be stressful! Harry doesn’t have any awareness of his own limitations so he just has to be watched. He’s a really happy boy and quite laid back but he still has seizures daily so when they happen you need to make sure he’s safe so he doesn’t hurt himself.

“When we come to Little Havens the girls can amuse themselves quite easily and you feel like you’re being looked after – I don’t even have to do any cooking! It is hard to hand over his care and I don’t think I’d have done it if I didn’t have all three of them.       

“We speak to other families who come here as well, and although you may not see them for months or a year, you feel like you’re not on this journey alone and as the girls get older it’s about them getting support from here as well.

“Despite all of these challenges Harry is literally the happiest little 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 a life-limiting condition is devastating and life changing but it has made me determined to make every day count and to make a difference.”

Lucy, Harry’s mum

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