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When I turned fifty last December, I made the totally mad decision to run a half marathon to mark my half century. Mad, because I am a truly terrible runner –in fact, I don't even like running. So why do it? Well, let me tell you about Lewis.
Lewis was the precious son of our friends Gordon and Norma and big brother to Megan. He was a beautiful baby and mischievous toddler and we were devastated when, at the age of four, he was diagnosed with Sanfilippo syndrome. Sanfilippo is a rare genetic disorder which causes gradual mental and physical deterioration and eventually premature death, normally in the teenage years. Over the next few years Lewis lost his mobility, becoming confined to a wheelchair. He began having severe seizures. He lost the ability to eat or drink and was fed via a gastrostomy peg. He also lost the limited speech he had and general awareness of the world around him. He began developing serious chest infections and eventually succumbed to these in February 2015, aged 17.
CHAS ( Children’s Hospices Across Scotland) became a huge part of the family's life from June 2004. For the next eleven years, Rachel House Children’s Hospice in Kinross provided them with a safe haven, a place of warmth and fun where they could go for 3-4 day breaks which allowed Gordon and Norma to be mum and dad again, and not the carers that they had become in their own home. They were also able to meet with other families who were in the same position and to share their stories and experiences. At the house, there was always someone available to talk to Gordon and Norma, and to support Megan. The staff knew Lewis very well, and supported the whole family through the tough times when he was very ill and in the days and weeks that followed his passing. As the family put it, 'If it wasn’t for the love, care and support of everyone at Rachel House we, as a family, would never have been able to come to terms with the loss of Lewis.'
When I visited Rachel House in 2015, I was completely blown away: where I had imagined a clinical place full of sadness and despair, here was a house that felt like a home, full of colour, warmth, laughter, fun and –overwhelmingly – love. It is a very special place and I am setting out to raise money to support the wonderful work that is done there in memory of a very special boy, by running in the Lake Vyrnwy Half Marathon on 10th September. This is a massive personal challenge, believe me: 5K is more than far enough for me, 21k is completely bonkers. However, I am determined to do it and hope to finish on my feet (although crawling may have to be an option!).
Please, please dig deep: every penny I raise will go to Rachel House.
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