The mum of a little boy cared for by Essex’s only children’s hospice, Little Havens, is taking part in an event to raise money for the charity.
Lucy Johnson, 41, from Great Waltham in Chelmsford, will take park in the Dirty Weekend Rat Race on Saturday 7th May, an assault course with 150 obstacles covering 13 miles. Lucy’s son, Harry, seven, attends Little Havens Hospice in Thundersley for respite breaks with his family, including dad Stuart, 40 and sisters Iris, four and Florence, three.
In 2010 Harry was diagnosed with Leighs Syndrome, a form of Mitochondrial Disease – caused when there is a mutation to the mitochondrial part of your DNA. Harry is unable to walk or talk and has complex epilepsy so needs constant monitoring. The family has been going to Little Havens for respite breaks since 2014.
“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.
“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. I have now given up work but 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!
“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.”
So far Lucy has raised almost £2,500 in sponsorship for the event, which takes place at Burghley House in Lincolnshire.
“I’m doing it with a friend who did it last year and I signed up after she’d completed it so I blame her! I would never describe myself as a 'natural athelete'. In fact I had probably never been for a run until three years ago so this is going to be a huge challenge for me, but I am determined.”
Little Havens provides respite and end of life care to babies, children and teenagers with life-limiting conditions as well as support for families. They are a registered charity, not part of the NHS, and receive limited government funding.
For more information on Little Havens visit havenshospices.org.uk/littlehavens to sponsor Lucy go to justgiving.com/lucy-johnson22