*Rebecca Hudson, Alex Allday, Dan Ball, Danny Whitfield, Hannah Hudson, Helen Culloty*

There are currently approximately 8000 people in the UK diagnosed with Huntington's disease, a life limiting, debilitating and terminal illness with no known treatments or cure. 

If you are lucky enough that your family does not carry the faulty gene, this is likely to be a disease you have never had to worry about or given a second thought to. We believe that if more people were aware of the disease and more money is raised, the prospects of people living with it could be brighter.

Sadly, Huntington's Disease has affected someone very close to us which is why we are determined to raise money to help find the cure...

What is Huntington's Disease?

• Huntington's disease is a genetic condition that impacts the brain and nervous system. 

• It strikes a person in the prime of their life. Most symptoms begin between ages 30-50 years old.

• Symptoms of HD are described as having ALS, Parkinson's and Alzheimer's-simultaneously.

• It is a progressive condition affecting movement, the ability to swallow and eventually makes you immobile. 

• The symptoms occur because of damage and death of the brain cells as the disease progresses.

• Each child of a parent who has Huntington's has a 50% chance of inheriting the disease.

• Despite researchers knowing the cause of disease since 1993, there is still so much unknown about this extremely complex, terminal brain disease and currently no cure.

Rebecca's Journey...

Huntington’s Disease has been in my family for generations. As a genetic illness, parents have passed it onto their children without being able to save them from their predetermined fate. My granddad deteriorated and my mum watched him, knowing that it could one day be her. In turn, I watched her deteriorate knowing it could one day be me.

The mental and physical toll that HD has on the affected person and their family is permanently damaging. I’ve witnessed the perilous decline of my mum, as she suffered serious falls from her loss of balance which leave her prone to black eyes and bruises. We’ve seen her cognitive function dissolve to the point where she requires a full-time carer to enable her to function effectively - things like writing and walking and dressing herself are no longer possible because that part of her brain no longer functions - it's just not there. The neurological impact of the disease means that independence and dignity become impossible to maintain. Watching a parent go through this is a painful experience, but knowing that you are watching your future play out before your eyes while you are helpless to stop it really makes this disease so much harder to cope with.

The HD also triggered Schizophrenia in my mum, who was sectioned months after developing symptoms that left her unsafe to be alone. She was hospitalised for almost a year and unable to function for most of that. The family were left feeling helpless, visiting her every day to keep her spirits up as she experienced the life she once knew, slip away in a hospital room, surrounded by strangers, scared and alone. 

I was lucky enough to be raised by the most loving and caring mum in the world, but by her 30s we started to lose her to the disease, and before long she was unrecognisable as the person who walked us to school every day and made our childhoods so full of love. With this, we had to grieve the loss of the woman that she so briefly got to be, and who we barely remember. She is still an amazing woman who I love more than anything, but the fact that I will never know who she truly is, without this illness, is something I find very difficult to comprehend. Her strength throughout this has been inspiring. 

Myself and my sisters are all susceptible. Like flipping a coin, there’s a 50% chance of freedom and a 50% chance of developing this fatal disease.  After some counselling, I decided it was time for me to face my biggest fear... I tested positive for HD in January 2021, and I know my life will never be the same. 

My CAG count is 45, a very conclusive ‘yes’. I will never get to experience the normal life events that I see my friends experience - falling pregnant, making career plans and retiring are no longer part of my future.

Of course, I do try to see the positives. I can control how I live the next couple of years of my life while I am symptom-free. This to me is a huge privilege as I can ensure I enjoy every moment, appreciate what we would usually describe as the 'small' things.

Both my sisters will have to go through the same process and I hope with all my heart that I have been the unlucky one and that they find their freedom.

As there is no cure for HD and no treatment, I think now is a better time than ever to raise awareness of this terminal illness and raise money towards searching for a cure.

If you can help me on my journey to finding a cure I would be very grateful. Myself and 5 others have set a challenge to climb 8000m in elevation each over the month of April for the 8000 people in the UK living with the disease. This is almost(!) the height of Mount Everest. I will keep you updated throughout my challenge, posting updates throughout the month. 

If you can share my post or donate then I want to thank you from the bottom of my heart.

The Huntington's Disease Association supports anyone who is affected by Huntington's disease across England and Wales. We pursue the best possible care; provide training & advice to families and professionals; raise awareness, and promote research towards better treatment and care.