‘If something’s in your capability, use it to help someone else’
Chloe Paterson on her journey along the Trans Pennine Trail(Image: supplied image)
A keen runner decided to use her ability to help the family of a Hull baby diagnosed with a rare and devastating genetic condition. Chloe Paterson is a close friend of Ella Burton, mum to baby Otto Sparkes, who is sadly unlikely to live beyond the age of two.
Chloe said she wondered how she could help Otto, now ten months, and raise awareness of his condition, Krabbe leukodystrophy. “I’ve been running for about three years now and I’ve just been getting progressively better with it,” said Chloe, 26, of Hessle.
“When Ella first told me about Otto I was so sad to think of what she was going through and I thought, how can I help her? I thought, what am I good at?”
Chloe had the idea of running “from one side of the country to the other”. She said: “It’s not normal, I know.
“I thought it would be a way of drawing attention to Otto and his parents, Ella and Keiron.” Chloe ran the entire length of the Trans Pennine Trail, which connects Southport on the west coast with Hornsea on the east coast.
She completed the challenge last week and so far her crowdfunding page has reached more than £12,000. Chloe said: “I enjoyed it, weirdly.
“It did get hard at times. There was one day when I’d been running for about ten hours in the sun with no shade, along the River Ouse, and because of the heat I wasn’t fuelling properly and I did get sick.
“I had the endurance there – I’ve run 100 miles in 24 hours before – so I did have that base there already.” Chloe stayed in Airbnbs and hotels along the route, mapping her journey on Strava [fitness tracking and social networking app] and returning to the starting point from where she had left off each day.
“I didn’t get any injuries or calf strains or cramps. I only got a tiny, tiny blister on the side of my toe.”
Chloe said: “I never imagined I’d raise that amount of money at all – I set the target at £2k – and the JustGiving page is still open and is still climbing.”
Chloe, who has known Ella for five years since they worked together, said she was “having a rest” at the moment but fully expected to get “itchy feet” again and want to do something else to help Otto and his family.
On her appeal page she had said that the 215 miles of the Trans Pennine Trail was “nothing compared to the strength Otto is already showing every single day, and the courage Ella and Keiron now need as they navigate a reality no family should ever have to face”.
Chloe said: “I think people can do anything they put their mind to. If something is in your capability, use it to help someone else.”
Ella has previously spoken about Otto’s rare condition that will lead to him being unable to see or hear, and ultimately to his death when he is around two years old. Up until his diagnosis, Otto’s parents had never heard of Krabbe leukodystrophy that affects only one in 100,000 to 250,000 babies.
As well as making as many memories as they can with their baby son, Ella and Keiron want to raise awareness around the disease and the symptoms that other babies may present in the future, to help other families.
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