3 CHALLENGES TO HELP JAKE ACCESS LIFE CHANGING TREATMENT

On 11th July I will take on the Three Peaks Challenge, on 13th September I will run a Half Marathon, and on 19th October I will complete the Everest Stairmaster Challenge. This final challenge will be a 16-19 hour endurance challenge.

I’m undertaking these three events to raise vital funds for Jake, a remarkable 16-year-old who is facing an unimaginable battle against Friedreich’s Ataxia. I have recently come across his fundraising campaign which I have posted below.

Jake is a 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 ambitions of going to university. He loves music and books, almost as much as he loves his cat, Bella.

Like most teenagers, Jake should be looking forward to the future. Instead, just before Christmas, he received a devastating diagnosis: Friedreich’s Ataxia.

Before then, our family had never heard of this disease. It is incredibly rare, but also cruel and fast-moving.

Friedreich’s Ataxia is a genetic neurodegenerative condition that most often develops during adolescence. It progressively affects mobility, balance and coordination, while also causing sensory, sight and hearing loss. It can affect the heart and, at present, there is no cure.

For the first time, however, there is hope.

A treatment called Omaveloxolone has been medically proven to significantly slow, halt and, in some cases, reverse the progression of Friedreich’s Ataxia. Access to this treatment could increase Jake’s life expectancy and help him continue living life to the fullest for as long as possible.

Unfortunately, there are two major obstacles.

Firstly, the treatment is most effective before symptoms progress too far. Jake has only recently been diagnosed and remains mobile, meaning time is critical. Every day without treatment risks further, irreversible damage.

Secondly, although Omaveloxolone is available in parts of Europe and North America, it is currently unavailable in the UK.

Our only realistic option is to seek treatment abroad, with Germany currently appearing to be the best route. The cost of treatment is approximately £300,000 for one year, before additional costs for testing, monitoring and travel. This is far beyond what our family can afford alone.

Jake has already endured more than most people face in a lifetime. He lost his mum to a brain tumour when he was just 13 years old. Despite this heartbreaking loss, he stayed strong, worked hard and successfully passed all of his GCSEs. Now he is facing another life-changing challenge.

We are asking for your help.

Every donation, no matter how large or small, will bring Jake one step closer to accessing the treatment he urgently needs. If you are unable to donate, please consider sharing this page with friends, family and colleagues.

Together, we can give Jake the opportunity to keep pursuing his dreams and make the most of the future he deserves.

Thank you for your kindness, generosity and support.

Please note: 7.5% of all donations made through Tree of Hope in relation to this appeal will be allocated to the charity’s general charitable purposes to cover core operating costs.

If insufficient or surplus funds are raised, donations may be used, where appropriate, to support Jake’s needs in accordance with Tree of Hope’s charitable objectives. If any funds cannot be used for Jake’s benefit, they will be transferred to support the wider charitable purposes of Tree of Hope.