On July 12th, Adam Tuckwell and his friend, Laura Osborn, will set out to conquer Race to the Stones, a daunting 100km race from Lewknor, Oxfordshire, to the Avebury Standing Stones.
Orla’s story
Orla Tuckwell was just two when she died of a medulloblastoma, after a year of tough treatment failed to cure her.
Orla’s tumour had a mutation so rare that specialists did not know of another case anywhere in Europe.
Adam, who lives with wife Naomi and daughters Ava and Poppy, Orla’s older sisters, said: “Orla was our everything, the final piece in our little family puzzle, and made us complete.
“She had the most amazing brown eyes that would melt your heart whenever you saw her. She would have you wrapped around her finger within minutes. She loved playing in her little house in the garden, playing the hostess and dragging adults into a three-foot-high garden house to serve them pretend afternoon tea.
“We don’t get to care for Orla in the same way that we used to, but we are very much still her Mum and Dad, so it is our job to tell the world her story: that although her life was short, she was still here, she lived, she was loved, and she was amazing.
“Through challenges like this we get to do that, to show people pictures of her and tell her how much we love and miss our beautiful girl.”
100km Race to the Stones: A mighty challenge
Adam is no stranger to challenges that push his physical limits. Since losing Orla, he’s conquered the Yorkshire Three Peaks, completed the TCS London Marathon, and run four miles every four hours for 48 hours.
Aided by friends and family, his efforts have raised an incredible £123k for Great Ormond Street Hospital (GOSH) where Orla was treated. But the 100km Race to the Stones – the UK’s biggest ultra marathon – is his most demanding challenge yet. It’s nearly twice as far as he and Laura have ever run before.
This will, without a doubt, be the longest distance either me or Laura have ever run, and we’re pretty nervous, but also super excited. Thinking about Orla will keep us going.
Adam
“Orla went through so much. Not even a 100km run will compare to everything our beautiful girl had to endure. She is our strength, our north star, and will always be our inspiration.”
“Before Orla was diagnosed, we knew very little about brain tumours, especially paediatric brain tumours. But after living in this world for months and years, you realise how limited the treatment protocols are, and this needs to change.
“Although there have been great advancements in things like molecular profiling, and combined therapies, we are still forced to choose such harsh treatment options, many of which have not changed in 40-50 years.”
Raising awareness
On race day, Adam and Laura will post updates on their progress every 20km, via Orla’s Instagram page.
The updates, designed to tell Orla’s story and raise awareness of childhood brain tumours, will follow her journey from diagnosis to relapse, including information on symptoms, surgery, and the side effects of treatment. Racing to post each update will also be an incentive for Adam and Laura to tick off each 20km milestone.
Daunting as the task may be, Adam is confident the pair will complete it. He said: “I’m looking forward to the finish line and am picturing holding my little Orla’s hand as I cross it! The bit that I’m dreading is getting past 60km, as this will be unknown territory for me.
“We are doing this to create a legacy for Orla, and to help others who are thrown into this world of paediatric cancer and brain tumours. We need to do more for our children, and this will only change through funding, technology and expert research.”
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