In January this year, we lost our beautiful daughter Lily Chapman at just 5 months old. Myself and Matt with our good friends George and Carla will be cycling from Land's End to John O' Groats in the summer to raise money for Rainbows Hospice and The Lily Foundation.

Below is a shortened version of Lily's story with some information about her condition which gives some insight as to why we want to raise money for two important charities.

When Lily was 3 days old, she became very ill and the next day was blue lighted up to Manchester's neonatal intensive care unit for a suspected metabolic condition. This was the beginning of a tough journey for Lily - one that she fought so bravely. After many tests which produced no answers, Lily continued to improve and baffle specialists so we were allowed home whilst they conducted genetic tests.

At just 2 months old, Lily was diagnosed with Mitochondrial disease, specifically PDH, or pyruvate dehydrogenase deficiency complex. We were given the devastating news that Lily had a severe case of the life limiting and progressive condition and that as each child with the condition is different, they could not tell us what the future would hold.

Just a couple of weeks after her diagnosis, Lily was taken ill again and was placed on a ventilator at Nottingham Paediatric Intensive Care Unit where we were told more life shattering news that Lily may only have hours or days to live once the ventilator would be removed. Lily being a little fighter proved everyone wrong and after a 10 night stay at Rainbows Hospice (who were incredible at looking after us all), we came home to spend Christmas together as a family.

After a couple of blissful months at home and lots of cuddles, Lily decided one morning that she had no energy left to fight the condition and passed away leaving the biggest hole in our family. Lily has brought so much joy into our lives and shown us that the most important thing that matters in life is love. We miss her terribly and felt we needed to do something worthwhile in her memory - hence Land's End to John O' Groats.

Only a few hundred cases have been diagnosed worldwide. Within PDH, there are 100 known variants and Lily had a new variant not seen before. Unfortunately there is no treatment for PDH other than to provide relief for any symptoms and provide care support. It's important for us to support research in this field and care support for families in the situation.

Thank you for any support or donation, it means so much to us.

Becky, Matt, George and Carla xxx

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