My son Harry was diagnosed with Leigh's Syndrome when he was 21months old.  There is no cure for this and for Harry it is debilitating and life limiting. Due to his condition Harry is unable to walk or talk and has complex epilepsy so requires constant care and supervision. Despite all of these challenges Harry is literally the happiest little boy I think you will ever meet. Being told this about your child is devastating, and having a child with such a complex disability and uncertain future has made me determined to make every day count and to make a difference. Harry is now 9 years old and at the moment his condition is stable, however I have learnt to live with the fact that this will not always be the case.

After Harry was diagnosed we were referred to our local children's hospice, Little Havens. At the time 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, despite the fact that every family there has to face the fact that there is no cure for their child's illness. We go to stay at the hospice 3 or 4 times a year and the time we spend there gives us all a chance to have a break from the daily challenges that we face with Harry. The team at the hospice cares and supports each and every one of us including Harry's 2 little sisters who love spending time there with their amazing big brother.

On the 22nd April 2018 I am going to be running the London Marathon with my brother Oliver to raise money for Havens Hospices who continue to help and support my family and so many others. Their specialist care is free but they need £46,000 every week to be there for everyone who needs them. Oliver and I would really appreciate your donations to help us support this utterly amazing charity. This is going to be a massive challenge for both of us, but we are determined. Together we're 'Making every day count'.

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