I am raising money for the Huntington's Disease Association (HDA), a wonderful charity that supports anyone who is affected by Huntington's Disease (HD) across England and Wales. They pursue the best possible care; provide training & advice to families and professionals; raise awareness, and promote research towards better treatment and care.

To raise money for the HDA, I will be doing the Three Peaks Challenge in August 2022, alongside three other young adults who are also impacted by Huntington's Disease. 

Huntington's Disease is a rare neurodegenerative illness, meaning as time goes on the person with the disease deteriorates due to the effect it has on the body's nervous system. It is caused by a faulty gene on chromosome 4, where too many CAG repeats occur. There is currently no cure for HD (although there is promising research happening into finding one!)

Symptoms of HD can include jerky movements, poor memory, change in balance, slurred speech, depression, and change in behaviour, such as angry outbursts. As the disease progresses, so do the symptoms and those who have it need more care. Everyone is impacted differently by Huntington's Disease.

Huntington's Disease is also a genetic disorder, meaning any children of an individual who has the illness are at a 50% risk of having the faulty gene and developing it. To find out if you have the faulty gene, you can receive genetic counselling and undertake a genetic test.

My Dad was diagnosed with HD in 2008 and had symptoms such as jerky involuntary movements, changes in behaviour, and a change in his balance. While at first he was able to drive and go to work, he eventually had to give both of these up as his symptoms worsened. Over time Dad moved from walking independently to being pushed in his wheelchair. He also had a deterioration in his speech and swallowing. He needed support in toileting, washing, changing, getting in/out of bed, moving around the house, and feeding. Mum was his main carer, and my brothers and I would also provide care.

In January 2018, Dad moved into a care home, where 24-hour care was available. During this time Dad was in the later stages of HD. He had lost a lot of weight, had great difficulty speaking, and would spend a lot of time in bed. The staff who worked with Dad were brilliant and looked after him so well - giving him all the weetabix that he desired!

In October 2019, Dad sadly passed away shortly after being in hospital with aspiration pneumonia, at 51 years old. Therefore, I am also doing the Three Peaks Challenge in his memory.

As Dad had HD, it means that my three brothers and I all have a 50% chance of developing Huntington's Disease when we are older. Being at risk of HD, and seeing first-hand the impact it has on a person, is quite terrifying. Knowing that HD could also have a similar impact on me does make me worry about the future.

When I was about 13/14 we met with a specialist youth worker from the HDA who provided my brothers and I support while we were at school, up to my first year of university. When this advisor left, another was recruited, and ever since he started the role in 2018 he has been so supportive with everything HD, from Dad moving into the care home up to now. The support from both youth workers has been so important whilst growing up and dealing with HD - knowing there is someone there who will listen and completely understands makes such a difference! 

I am extremely lucky to have received such a high level of support from the HDA, and other charities such as HDYO too. I am aware though that not everyone has this kind of support. 

I hope that doing the Three Peaks Challenge and raising money for the HDA can help them reach out to and support other young people impacted by Huntington's Disease. It can be such an isolating disease to live with, especially when it feels like no one understands what you are going through. Please donate anything you can to help others receive such invaluable help and support!