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Derby parents challenge in memory of five-month-old daughter

Lily Chapman was just five-months-old when she died in January of a rare deficiency disorder that couldn’t be cured. 
 
Now her parents, Becky and Matt, of Derby, have set themselves the challenge of cycling from Lands’ End to John O’Groats in her memory. They aim to raise thousands of pounds for us because we cared for the whole family, and The Lily Foundation.
 
For Becky (33), who says she has been on a bike twice in 15 years and never exercises, this will be a gruelling task. “The whole point of this was to make it a challenge,” said Becky. “Lily faced challenges from the minute she was born and she fought for her life.” 
 
When Lily was three-days-old, she became very ill and was blue lighted to Manchester's St Mary’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,” said Becky. “After many tests which produced no answers, Lily continued to improve and baffle specialists, so we were allowed home whilst they conducted genetic tests.”
 
Two months later, Lily was diagnosed with Mitochondrial disease, specifically Pyruvate Dehydrogenase Deficiency complex. Becky and Matt were given the devastating news that Lily had a severe case of the life-limiting and progressive condition. Only a few hundred cases have been diagnosed worldwide and Lily had a new variant not seen before. No one knew what the future held.
 
“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,” said Becky. “Lily being a little fighter proved everyone wrong and after a 10-night stay at Rainbows, we came home to spend Christmas together as a family.”
 
The family were transferred to our hospice from ICU. Becky described it as somewhere they felt protected and looked after. “It was the most incredible place and I am so glad we got the chance to go,” she added. “We were so exhausted when we arrived and although we were scared to leave Rainbows and the professional support for Lily, we felt so much stronger to deal with everything. 
 
“I was amazed at how well we were looked after as well as Lily, and it was about us having time as a family. We got to swim in the Hydrotherapy Pool, which relaxed Lily so much, and we made things in the Arts and Crafts Room; things we will be able to keep and treasure forever. Without Rainbows, we would never have had that.”
 
After a couple of blissful months at home and lots of cuddles, one morning Lily had no energy left to fight the condition and died leaving the biggest hole in their family. The three of them came back to our hospice and Lily spent time in one of the special bedrooms. 
 
“Lily has brought so much joy into our lives and shown us that the most important thing that matters in life is love,” said Becky. “We miss her terribly and felt we needed to do something worthwhile in her memory - hence Land's End to John O' Groats.”
 
The couple will begin their journey on July 2 with their friends George and Carla Roberts. Matt’s parents, Dave and Noeline, will drive the support vehicle. 
 
Cycling through the counties of England and Scotland, the team will take on 1,000 miles. The shortest day will see them ride 43 miles and the longest 80 miles. 
 
The team is also being backed by Matt’s employers, Castle Donington-based Available Car – who are already strong supporters of Rainbows. Available Car has funded their kit and will match fund donations.
 
“It is going to be an emotional journey,” said Becky. “But we can do it for our baby.”
 
To sponsor Becky and Matt, visit justgiving.com/fundraising/Rebecca-Chapman24