In what she admits was a ‘moment of madness’, Heather Tobin from Herefordshire decided to run the London Marathon this year. As the big day (October 2) draws closer, Heather, is confident she’s going to make it, thanks to the support and training of her running buddy, Delyth Powys, and the knowledge that she has already raised almost £3,000 for a charity very close to her heart, Children’s Liver Disease Foundation (CLDF).
Heather, 56, a retired detective inspector, knew nothing about the charity until three years ago when her daughter, Lily, then nine, was diagnosed with the rare condition, primary sclerosing cholangitis. “It’s a horrendous, debilitating and life-changing disease which has necessitated countess hospital admissions, surgeries and a cocktail of medication,” explains Heather.
“Her condition deteriorated significantly last year and in June this year, Lily was fortunate enough to receive a liver transplant. We know she has a long road ahead but we are hopeful that her quality of life will now significantly improve and we’re so incredibly grateful to her donor.
“We discovered CLDF shortly after Lily was diagnosed and the support we have received as a family and Lily has received individually, has been tremendous. A friendly voice on the end of the phone….a quick response to an email enquiry…The Hive where Lily can ‘meet’ other children who have undergone a liver transplant and realise that she is not the only one….the specialist knowledge… the experience….the calmness…the reassurance….the signposting…..they have all been invaluable.
“So when the idea of running the London Marathon to raise funds for CLDF was put to me, well why wouldn’t I? CLDF is such a small charity that until, or unless you suddenly find yourself propelled into this frightening world of hospitals, operations and transplants and all that goes along with it, you wouldn’t know it existed. Like all charities, they’ve seen a massive reduction in donations since the pandemic and now the cost of living crisis. I see this as a small way in which to raise awareness and funds for this life-changing disease.”
Although Heather’s training programme has been disrupted by Lily’s many hospital admissions and home treatment, thanks to Del’s motivation and encouragement, she is undaunted.
“Of course it’s going to be a real challenge but if Lily can endure what she has done for the past three years, I can definitely do 26.2 miles,” she says. “Despite everything she has been through, she remains remarkably resilient, positive and very funny. Naturally she is utterly horrified at my running ability and deeply embarrassed at my lumbering around clocking up the miles! She’s my absolute inspiration and I’m going to do this ‘for the love of Lily’ and in honour of her donor and their family.”
Rebecca Cooper, 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. In order to do this however, we rely on voluntary donations, so we are delighted to hear that Heather and Delyth are taking on the London Marathon for us. Training and fundraising for the Marathon is a big challenge for anyone. To do so when you are caring for a child who is going through transplant is truly remarkable. We really do wish Heather and Delyth all the best for next Sunday.
You can support Heather’s London Marathon challenge by going to Heather Tobin is fundraising for Children’s Liver Disease Foundation (justgiving.com)
