Help Our 16 Year Old Boy Access Life Saving Treatment for Friedreich’s Ataxia

To follow Jake's journey and keep up to date with our fundraising event and updates, please visit our Facebook page - https://www.facebook.com/profile.php?id=61586103760948

*UPDATE - 2nd June 2026

We are off to Germany on Sunday to get the next 3 months’ worth of the drug Omaveloxolone, all being well. Jake has had no serious side effects with the drug, thank God, but he does get very tired. However, we will address this with his neurologist at his appointment next Monday.

We really appreciate your generous donations and lovely supportive comments. They mean such a lot. We have enough in Jake’s fund to pay for this next 3 months of treatment, which is approximately £64,500. We will have the same cost again, in three months time.

The drug is so expensive that we have the constant worry of trying to achieve our target. If you can possibly make another donation, however small, it would be really appreciated and don’t forget to tick the Gift Aid box, if it is applicable to you.

We had a very good turn out for the Charity Comedy Event on 3rd May. We are now organising our next event, a Charity Gala Ball. If you could organise any fundraising events yourselves, however small, such as coffee afternoon, bring & buy sales, quizzes or sponsoring someone in a race etc, that would be a wonderful way to raise funds.

Finally thank you for sharing in our journey and giving us support. Ann McGregor, (Jake’s nan.)

*UPDATE - 28th April 2026

A great big thank you to all you lovely, generous people for your continued support. Jake is now on his second month of his medication & seems to be doing well, with no side effects. We have our 2nd appointment in Germany, June 8th for his next supply of medication. We have to continue fundraising for him, to keep on top of expenses. His first fundraising event is at the Hot Water Comedy Club, Blackstock Market, Liverpool, L6ER, Sunday May 3rd, from 3-5pm. We have a line up of 7 great comedians, who are all performing for free! How is that for generosity? We are also raffling an Everton signed football shirt, drawn on the day. We look forward to seeing you there, if you are able to come. We will keep you informed of Jake’s progress & our future fundraising events. Love to everyone. Ann McGregor, Jake’s nan.

*UPDATE - 7th April 2026

Jake and I just want to give our most heartfelt thanks to everyone for all you have done to help Jake so far, you have all been truly amazing!! Without you wonderful lot, we would not have been able to start Jake on his treatment, which we now have. But to keep his vital treatment going we do need to raise even more still. We will not stop fighting, and with the help and support of lovely, brilliant people like you, we will get there!!

Thanks again, so very, very much.

Jake and Paul x

*UPDATE - 1st April 2026

I just wanted to update you all on Jake’s progress. We are more than a third of the way to our target, thanks to all your kind & generous donations. Jake started the drug Omaveloxolone, Sunday 15th March, nearly 2 weeks ago. Thankfully he has had no side effects. We are all so relieved that he has the first three month’s supply of the drug & therefore a real chance of improvement in the quality of his life. We still need to continue to fundraise because this is an ongoing expense, until the UK provides access of Omaveloxolone in the UK.

We need to say a special thank you to Jacelyn Thomas who ran in the Liverpool half marathon & raised a great deal of money for Jake, 15th March. Ironically, this was the very day Jake started to take his medication. We would also like to send out a huge thank you to the bakery & patisserie, on Aigburth Road, Mon Petit Chou. They organise regular charity event runs on Sundays & they very kindly arranged a run, for Jake, from the patisserie, around Sefton Park & back, Sunday 22nd march. Bethan, the owner, her mother Cathy & the whole team, were so welcoming & generous. It was a real pleasure to meet them & the MPC running club. They were a great bunch of people, running for charity and keeping fit. There was a real feeling of community. They too raised a lot of money, for Jake, which is so much appreciated by all of the family.

*UPDATE - 2nd March 2026

I just wanted to give everyone an update. We have had a video consultation with the hospital in Germany, Wednesday 25th February. It went very well and we are now just waiting for the appointment to go over there for Jake to begin his treatment. We are feeling very relieved and hopeful. We are more than a third of the way in reaching our financial target and that is all down to your kind generosity. I noticed there has been a bit of a pause in donations, so if you are able to give another small donation, that would make a big difference. Please keep spreading the word about Jake’s page. Jacelyn Thomas is running a half marathon for Jake, Sunday 15th March, in Liverpool - https://www.justgiving.com/page/jacelyn-thomas-4. Please support her, if you are can.

We are also arranging other fundraising events Our first big event is at The Hoit Water, Comedy Club, 15-17 Blackstock Street, Liverpool , L3 6EP. It will be Sunday 3rd May from 3-5pm and tickets cost £18. I am waiting for a ticket link from them. We will be raffling a signed Everton Football Club shirt, with authentication, at the event. More details to follow. Thank you so much for your continued support and kindness. Love to you all, Ann McGregor, Jake’s nan.

Jake is a 16 year old beloved son, grandson, nephew, cousin and friend.

He is clever, witty and charming, a talented artist and writer with a passion for learning. He is currently studying A levels in Psychology, Politics and Art, with high hopes of going to university. He loves music and books, almost as much as he loves his cat, Bella. He had a bright future waiting to be explored, just like most teenagers.

Just before Christmas, he was diagnosed with Friedreich’s Ataxia, a disease that we had never heard of. It is very rare. It is also very cruel and swift acting.

Most often Friedrich’s Ataxia manifests in adolescence. It is a genetic, neuro degenerative disease. It progressively affects mobility, balance and co-ordination. It causes sensory, sight, and hearing loss. It also affects the heart. There is no cure. And up until recently, no treatment.

Hope has come with a new drug called Omaveloxolone. Medically proven to significantly slow down, arrest and, in some cases, reverse the progression of this terrible disease. Access to this vital drug will not only increase Jake’s life expectancy but will also allow him to carry on living life to the fullest, for as long as possible.

There are, however two problems. Firstly, Omaveloxolone is most effective before symptoms progress too far. With Jake only recently diagnosed, and still mobile, speed is very much of the essence. We cannot afford to wait. Every moment without this vital treatment, risks further damage. Secondly, whilst readily available in Europe and North America, it is not available at all in the UK.

Our only option now is to seek treatment abroad. The best choice seems to be in Germany. The cost is £300,000 for a year of treatment, with extra costs for tests and monitoring. This amount is simply out of our reach.

Jake lost his mum to a brain tumour when he was 13 years old. He kept strong. He kept going. He kept studying. He soldiered on and passed all his GCSEs. Now he is faced with this disease, it is truly heartbreaking.

So, we are pleading, for your help. Every donation, however small, will make a difference. With your help we can give him the chance he needs. Will you please help us achieve this goal for Jake?

Please donate and share this page on social media.

7.5% of all donations to Tree of Hope in relation to this appeal will be allocated to the general charitable purposes of Tree of Hope to cover our core operating costs.

If we raise insufficient funds, or surplus funds, they will be used, if appropriate, to fund support for our child’s needs in accordance with Tree of Hope’s charitable objectives. If, in those circumstances, we are unable to use all or part of the funds for the benefit of our child, any funds that cannot be used will be transferred to be used for the general charitable purposes of Tree of Hope.