York woman who ‘hates running’ taking on half marathon for Liverpool teenager she’s never met

A York mother is taking on the Scottish Great Run to help raise potentially life-changing funds for a teenager he has never met.

Carrie Wray, 50 who works as director of operations and tech risks at Everywhere in York, was approached by a colleague to ask if the company would help with fundraising for his friend’s son.

Jake McGregor-How, 17, who lives in Aigburth, Liverpool, started noticing minor issues with his balance around five years ago, which were initially thought to be due simply to problems with his feet.

However, 6 months ago the issue became much more pronounced and following many tests and examinations, he was eventually diagnosed with Friedreich’s Ataxia, a genetic, neurogenerative disease which often first shows itself in adolescence, at the end of 2025.

It is a life-limiting condition which progressively affects mobility, balance and co-ordination, it can also cause sensory, sight and hearing loss. It also affects the heart.

‘I used to run until 2017 when I gave up as I couldn’t beat my personal best and so I started to hate it. It would have been easy to pick a challenge other than running but I wanted to move out of my comfort zone – keep challenging myself in perimenopause.’

‘Training hasn’t been going brilliantly – I was doing quite well about going out regularly and regularly running 10Ks but then my knees started hurting and I was diagnosed with hypermobility. But it is only a setback, I am pushing on through, and even if I have to walk it, I am going to complete this race for Jake.’

There is no cure for Jake’s condition, and until recently, no treatment. However a new drug, Omaveloxolone, has been medically proven to slow down, arrest and in some cases, reverse the effects of this terrible disease. It is, however, not available in the UK.

Jake’s father Paul How, 48, a claims manager for a local insurance broker said: ‘Jake had a totally normal childhood. He started to have small issues with his balance aged about 11, which appeared to be corrected with insoles.’

‘Around the time of his GSCEs he was very tired, so he had blood tests and was found to be anaemic, and then coeliac.’

‘But iron pills and a change of diet didn’t seem to make much difference so eventually we saw a neurologist who ordered genetics tests and Jake was diagnosed with Friedreich’s Ataxia the end of last year.’

Omaveloxolone is available in the US and many European countries – and costs around £300,000 per year.

Paul added: ‘We have raised over £133,000 from the kindness of family, friends, through events as well as kind and generous donations from complete strangers, and we are truly, ever so grateful to them all. But obviously we still have a long way to go. I am looking at every way possible of achieving our goal, basically, every penny counts for us.’

‘Until recently Jake had no idea he had any condition at all. Now he just wants the chance to live his life to the fullest for as long as possible.’

Carrie’s employer Everywhen is part of the Ardonagh Group, and the Ardonagh Community Trust will be match-funding what Carrie raises.

The family is being supported by children’s charity Tree of Hope, which helps families raise money for children and young people like Jake for medical treatments and healthcare services not freely available to them through the NHS and social care. The charity provides fundraising guidance, campaign development, financial management, charity registration and emotional support from the Family Support team. Families like Jake’s benefit from having the support, tools and resources to fundraise effectively as well as access to gift aid, corporate support while also providing donor reassurance.

To sponsor Carrie, donate to Jake’s fund or to find out more visit https://www.justgiving.com/page/carrie-wray-jakes-tree-of-hope or https://www.treeofhope.org.uk/get-involved/childrens-campaigns/help-our-16-year-old-boy-access-life-saving-treatment-for-friedreich-s-ataxia/