Meet the team – Colin
Colin and his family
This October, Colin is running the Virgin Money London Marathon for Sparks in memory of his daughter, Eilish.
When Eilish was just a couple of months old, she was admitted to hospital for MRI scans that noticed some abnormalities. Colin remembers being convinced that, whatever Eilish’s condition, “the advances in medical research meant there would be treatment available.” After searching through Google, Colin and his wife Kirsten discovered the condition Krabbe disease and the words “there is no cure” featured prominently in everything they read.
Krabbe disease (also known as globoid cell leukodystrophy) is a rare inherited neurological condition, occurring once in approximately every 125,000 births. Eilish lost her sight, began having seizures and could no longer make voluntary movements.
On 9 September 2014 Eilish died peacefully in Kirsten’s arms and with Colin holding her hand.
Colin and baby Eilish
“If funding research stops another Eilish dying from Krabbe disease then that’s a huge testament to her and indeed other conditions.”
Having realised there was no treatment for Krabbe disease and so many other conditions, Colin discovered just how “chronically underfunded” child-health research is.
To Colin, research matters because “it keeps families together, it means they don’t lose children because unfortunately people are still losing children to these rare and horrible diseases.”
Colin first discovered Sparks through a previous Krabbe disease research project, led by Professor Tim Cox. Sparks are currently co-funding a research project with Krabbe UK through the national call with GOSH Charity that aims to find a new stem cell treatment for Krabbe Disease.
Colin is now a trustee of Krabbe UK, a charity which raises money to help support families and research. They host an annual family weekend, where families who currently have children with Krabbe disease or who have lost a child to the condition come together, and this year they have been able to update families on the developments in Krabbe disease research over the last 12 months.
“We have been able to give them some hope and positivity about what we’re raising money for. Ultimately, we hope there will be a treatment which means that families won’t have to go through what we did and lose a child.”
Eilish and her mum, Kirsten
The London Marathon!
Colin has always wanted to run a marathon and this year, Colin is running the London marathon in Eilish’s memory, as it will have been six years since she was diagnosed. His wife, Kirsten, two sons and daughter Lara are coming down to London from Scotland to support him and to remember why he is running it. “I’m running in memory of Eilish and to raise money that will go to a cause that is very dear to our hearts.”
Colin used to be one of the top 35 football referees in Scotland, so he’s hoping his fitness levels will get back to what they were nine years ago through training for the marathon. His training is going well and his top tip is to have ice baths! “I put my body through ice baths after training runs to make the muscle pain go away.” He says both his sons find it very amusing watching him fill the bath with cold water and ice – “they’ve only managed to dip their hands in!”.
Colin hopes that the London Marathon won’t be his first and last marathon but “if I get to the finish line having run 26 miles 385 yards and says never again, I’ll feel so happy that I’ve done the marathon in London.”
In 2016, Caroline, our family liaison manager at Sparks ran the London Marathon as part of Team Sparks. Colin remembers speaking to her about it, “she had written a number of names on her arm to get her through each of the miles, one of the names was Eilish’s. She took a photograph of it before she started running and I think by mile one, all the names had disappeared by virtue of the sweat!”
Let’s hope this year’s marathon isn’t as hot as 2016’s…
To other people thinking of taking on a challenge for Sparks…
Colin’s advice would be “don’t waste time thinking about it! The more money we raise the more research projects that Sparks can fund and the more research that’s done the less children we will lose to these devastating conditions.
“Children’s medical research is underfunded and relies heavily on charities such as Sparks, particularly for rare and devastating conditions. If Sparks didn’t exist, then there would not be nearly the level of research going on in the UK that there currently is.
“There really is no time to lose.”
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