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?

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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.