May was a marathon month for 12-year-old Troy Parfitt from Corsham. He and his best friend William completed an amazing 26.2 miles each with a combination of running, cycling and dog-walking to raise over £1000 for Children’s Liver Disease Foundation!
CLDF is an important charity to Troy, who was born with a rare liver condition, alpha 1 antitrypsin deficiency.
“Troy was just 11 weeks old when he was diagnosed,” explains mum, Catherine. “It was a very worrying time. Troy lost a significant amount of weight during his first few weeks and was jaundice – it was terrifying. We knew nothing about liver disease in children but on a trip to see the professor at Birmingham Children’s Hospital we met a member of the CLDF team. They were great and made us feel as though we were not alone.”
“Alpha 1 is a genetic condition which is treatable but not curable and over the years, CLDF have given us information to help us understand Troy’s current and long term needs. They have also supported us through the genetic counselling process and helped ensure that Troy is not self-conscious.”
“Troy’s long-term health is not known but he is monitored and scanned regularly. He has suffered with pneumonia twice and hepatitis as well as repeated bouts of anaemia. He does not complain, however, but enjoys all the activities he can and lives life to the full.”
While his family have regularly raised funds for CLDF through school assemblies and half and full marathons Troy decided that the time had come for some fundraising of his own.
“I wanted a personal challenge and when I heard about the My May Marathon it sounded a good idea,” he says. “I want to support this charity because I don’t know how much I will need them in the future so thought I would raise funds now while I can. My friend William said he would do it with me which made it fun. William knows about the Alpha 1 and has never treated me differently. On days when we couldn’t complete the whole challenge together we kept in touch on social media and encouraged each other!”
William added: “I had exams during May so had to complete a 12 mile bike right at the end of the month! It’s been great fun and I hope to raise more for CLDF in the future.”
The pair were determined to complete the challenge and smash their joint target of £200, even when a bad ankle sprain occurred on day four! Troy had to clock up miles on the bike and treadmill rather than the road. However, this did not hamper his enthusiasm.
“It was painful,” admits Troy. “But I was never going to give up. I was amazed at how generous people were, so I really wanted to complete the challenge for them to show my appreciation. We even bagged a corporate sponsor, Bluefield, to match our funding!”
Alison Taylor, Chief Executive of Children’s Liver Disease Foundation commented: “CLDF is the only UK charity dedicated to fighting all childhood liver diseases, by providing information and emotional support, funds for research and a voice for all those affected. To do this however, we rely almost entirely on voluntary donations, so we are delighted to hear that Troy and William have completed this month- long challenge and really grateful for the funds they have raised. They should be really proud of themselves for making a difference to young people with liver disease throughout the UK.”
For more information on CLDF visit childliverdisease.org.