Wavertree hairdresser runs Liverpool Half Marathon to help raise funds for life-saving treatment for Aigburth teen

A Wavertree hairdresser is running the Liverpool Half Marathon on March 15 to help raise funds to pay for life-extending drugs for an Aigburth teenager who was diagnosed with a devastating genetic condition at the end of last year.

Jacelyn Thomas, 48, said:

‘I’ve regularly run 5Ks and some 10Ks, but a half marathon is a new challenge for me.

‘Training is going well but whenever it gets hard, the thought that I am doing it for Jake helps spur me on.’

Jake McGregor-How, 16, 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 Freidreich’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.

There is no cure, 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 Freidreich’s Ataxia the end of last year.’

‘Jake’s mother Gaynor died of a brain tumour three years ago, which was completely devastating, so he has already had such a huge amount to deal with. At the moment he is getting on with life as normal, studying for A levels and hoping to go to university.’

‘However, his condition will deteriorate, potentially quite rapidly, which is why we need to fundraise for this drug as quickly as possible. Time really is of the essence.’

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

Paul added:

‘We have already raised over £60,000 from the kindness of family, friends 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.’

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.

Tree of Hope CEO Becky Andrew said:

‘We wish Jake and his family all the best with their fundraising activities. We are pleased to give them support in reaching their fundraising goals.’

Find out how you can support Jacelyn run here and Jake’s Fund here.

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