A father is racing against time to raise £300,000 for specialist treatment in Germany that could slow his son’s rare degenerative disease before it permanently robs him of his mobility.

Jake McGregor-How, 16, from Mossley Hill in Liverpool, was diagnosed with Friedreich’s Ataxia (FRDA) in December 2025 – a life-limiting genetic disorder that progressively damages the nervous system and can ultimately affect the heart.

For five years, Jake’s symptoms were attributed to coeliac disease and anaemia, and he continued life as normal – completing his GCSEs and beginning his A-Levels.

But as his balance worsened and he began struggling to walk in a straight line last summer, his father Paul, 48, pushed for answers. After six months of testing, Jake received the life-changing FRDA diagnosis.

The diagnosis – for which Jake was prescribed vitamins – came just three years after the devastating death of his mother, Gaynor. In 2023, she passed away from brain cancer, multifocal glioblastoma, leaving the McGregor-How family struck by tragedy for a second time.

There is currently no cure for FRDA. However, omaveloxolone – a drug approved in parts of Europe and the US – has been shown to slow its progression.

But in the UK, the treatment remains unavailable after the National Institute for Health and Care Excellence (NICE) was unable to recommend its use on the NHS.

Now Paul, a claims manager, faces an agonising reality: raise £300,000 for a year of treatment in Germany or risk watching his son’s condition deteriorate further.

Last year, Jake McGregor-How (pictured) was diagnosed with Friedreich’s Ataxia,  a rare genetic disorder that progressively damages the nervous system and can affect the heart

Jake’s father Paul (left) is attempting to raise £300,000 for his son’s treatment in Germany, which is not available on the NHS

Speaking to the Daily Mail, Mr How described the heartbreak of being unable to access a treatment within ‘touching distance’ of Jake.

He said: ‘Jake’s Friedreich’s Ataxia diagnosis came just before Christmas 2025, following six months of testing.

‘We didn’t really know anything about the condition, so I began researching it online. I started reading about it, thinking ‘geez’ – people who have FRDA end up in a wheelchair within seven to nine years, and have sensory loss and heart problems.

‘To treat the disease, Jake was prescribed vitamins – calcium, vitamin D, vitamin E, and enzyme Q10. That’s the only treatments offered on the NHS.

‘So, I knew I had to look for other options before Jake deteriorated, and Omaveloxolone came up as an effective treatment on Google right away.

‘However, we found that Jake could not access this drug on the NHS as it is not approved for use in Britain, even though it is available all over Europe.

‘And it is heartbreaking because there is a treatment within touching distance – it’s not like we are living in the third world, this is Great Britain.’

Determined to access Omaveloxolone before Jake’s FRDA progresses further, Mr How identified University Hospital Heidelberg, Germany as the family’s best option for getting the treatment.

At 16, Jake is eligible to have omaveloxolone – an effective treatment for Friedreich’s Ataxia. However, the drug is not available on the NHS, meaning he would need to travel to Europe to access 

He said: ‘We have had an initial consultation in Germany, at the clinic in Heidelberg, and we have sent all of Jake’s medical records to them to see if he is eligible for the drug.

‘We were working on the hope that Germany would say ‘yes’ to treating Jake – and they did accept his case. That is the first milestone. 

‘So, if Jake was living in Germany, he would’ve had almost three months of Omaveloxolone already. Unfortunately, that is not the case, and whilst he is managing, I can see him more unstable than he was, for sure, and getting more tired.

‘Time is of the essence for Jake to access the drug.’

Omaveloxolone is an oral medication designed to slow the progression of FRDA by improving mitochondrial function in patients aged 16 and over.

The drug has proven highly effective in FRDA cases and, when used alongside treatments such as physical therapy, speech therapy and occupational therapy, can improve both quality of life and life expectancy.

At present, omaveloxolone is not accessible to NHS patients, leaving families like the McGregor-Hows seeking alternative – and often extremely costly – options.

For one year’s worth of Omaveloxolone in the Heidelberg clinic, Mr How has been quoted £300,000, in addition to the costs of travel and accommodation in Germany.

So far, Mr How has raised £100,000 of the £300,000 needed for Jake (pictured) to access omaveloxolone – a life-saving drug 

He has been fundraising through Tree of Hope to help offset the cost – but faced with such an unattainable and unsustainable long-term price, Mr How has questioned why the UK Government has not reconsidered making Omaveloxolone accessible for NHS patients. 

He said: ‘We are crowdfunding to raise money for treatment for Jake in Germany, and we are just taken aback by everyone’s generosity. We are nearly at £100,000 of the £300,000 goal. 

‘But moving forth, it is a case of hoping the UK Government will come to their senses and open negotiations with Biogen – the drug’s manufacturer – about allowing the drug to be used in Britain.

‘The medication gives children a chance to live a much more independent life, to continue to live their lives as they are now for as long as they can. This drug is medically proven to help; it slows down progression and sometimes arrests it.

‘There is hope and the fact the drug is there, it is available but we can’t get it is devastating.’

According to the National Institute for Health and Care Excellence (NICE), a body of the Department of Health and Social Care, a recommendation for the drug on the NHS was not possible because Biogen withdrew its ‘evidence submission.’ 

A spokesperson for NICE said they will ‘review this decision if the company decides to make a new submission.’ 

Mr How said accessing Omaveloxolone permanently, and at home, would give Jake a chance to live and pursue his future as any teenager would – an opportunity made all the more significant following the tragic death of his mother in 2023. 

Jake (centre) pictured with his dad Paul and mother Gaynor. Gaynor tragically passed away three years ago after being diagnosed with a rare and deadly brain cancer

Jake pictured with mother Gaynor. Mr How said he and Jake were only just ‘crawling out’ of their grief at Gaynor’s death when Jake was hit with the devastating FRDA diagnosis

He said: ‘Effectively, Jake and I were just crawling out of the deep grief of his mother dying and looking a little ahead to the future when we received the FRDA diagnosis. 

‘Jake’s mother, Gaynor, woke up one day and she could not see out of one eye. 

‘We rang the opticians and they referred us to the eye hospital, and we kept bouncing between them and neurologists – nobody could figure out what was wrong. Then she lost her sight in the other eye.

‘After about four months of tests, the hospital called us one day and confirmed she had a multifocal glioblastoma – the most aggressive form of brain tumour with a low survival rate. 

‘We had one last Christmas and she died within six months of being fine.

‘Jake was there the whole time his mother was ill – it’s obviously upsetting. But he was stoic, he carried on, he didn’t go off the rails. 

‘And through his FRDA diagnosis, he has also been stoic. All throughout this, Jake hasn’t really complained, but the diagnosis has made us consider his plans for the future.’

Mr How described Jake as a ‘talented artist and writer,’ but said the times to come ultimately depend on accessing the treatment in Germany. 

Jake (pictured) with the family cat, Bella. Aside from his illness, Jake is studying A-Levels and hopes to attend university – if treatment allows

He said: ‘At the moment, I am allowing Jake to have the same plans as he had before – do A-Levels. He’s studying art, politics and psychology. He also floated the idea of going to university in Edinburgh, or studying journalism.

‘But with these decisions, we are basically in limbo. We don’t know and can’t plan ahead.’

Despite this, however, Mr How emphasised he has not ‘given up hope’ of one day accessing omaveloxolone on the NHS permanently – and has his MP, Paula Barker, on board with raising the issue in Parliament. 

Ms Barker, Labour MP for Liverpool Wavertree, said: ‘Jake’s story is absolutely heartbreaking. 

‘Whilst it is not a cure, the drug Omaveloxolone would increase Jake’s life expectancy and allow him to carry on living life to the fullest, for as long as possible.

‘Sadly, this treatment is not currently available on the NHS and will cost Jake’s family £300,000 to access.

‘I have been in regular contact with Jake’s dad and have written to the Department of Health on his behalf to ask them to take the necessary steps to ensure it is accessible through our NHS. 

‘The department has informed me that Biogen, the company making the treatment, withdrew their submission and that is why NICE’s appraisal has been terminated. 

‘So, I am now in the process of writing to Biogen to urge that they re-submit omaveloxolone for appraisal.’