Huntington's disease is a neurodegenerative condition that currently affects around 8000 people in the UK.

The illness is caused by a faulty gene in your DNA (the biological ‘instructions’ you inherit which tell your cells what to do). If you have Huntington’s, it affects your body’s nervous system – the network of nerve tissues in the brain and spinal cord that co-ordinate your body’s activities.

People who have this condition can expect to have changes in their mood and personality, cognitive difficulties, issues with movement and mobility. They will also have problems with their speech and memory.

Although symptoms vary person to person once symptoms begin, the disease gradually progresses. A lot of people will need help and support to live day to day life.

Around 12 years ago my dad was diagnosed with Huntington's. 

This was after we sought medical advice because we knew something was wrong with him - he had changes to his personality and had gotten quite violent but he GP was convinced there was nothing wrong!

This went on for months back and forth with the doctors, they basically just said the usual crap ha, that he wasn't eating well enough or exercising enough.

My dad done each thing they asked but nothing seemed to get any better, but after family members demanded for him to be seen by a specialist for further tests he was finally diagnosed with Huntington's disease.

His diagnosis was a complete shock for us, as he was the first person to have this in our entire family.Although the diagnosis was a weight off our shoulders we had been told the condition was hereditary and each family member had a 50% chance of having it too!

Over the space of a couple of years some family members tested positive, some negative and some decided not to find out.

The choice to be tested or not is one of the hardest decisions you can make. I know from experience with our family that regardless of the decision or the outcome of the test, neither path is easier than another!  

People who test negative often have a strong feelings of guilt. Why are they healthy and able to live a full life when their siblings aren't? 

I decided to go in to be tested at the age of 20, the whole process is a bit of a blur but I got my results a few months before my 21st birthday, I had tested positive!!

This was one of the hardest days of my life - if I'm honest at the time I felt as though someone had put a sentence on my life..

I can safely say this was and will be the hardest thing I have been through.To watch someone you love deteriorate at the level dad was, knowing you have the same condition is one of the most surreal things you can do..

For years I allowed the worry and the fear consume me. It's easy to sit there in a pool of despair and think of all the things my dad won't get to see.. will he be able to see me walk down the aisle or get to hold my first baby.

I was so caught up in the worry I had stopped living!

Now at the age of 31 my view on life is much different. It took me until my late 20s to realise that I actually choose how I think and feel.. I can either let this consume me or I can choose to let the worry go..

And it's that simple!

Every single day I make a conscious effort to choose happiness and joy and love!! Don't get me wrong some days it's not that easy. There are days I leave the care home and just sit in my car crying! But these days are few and far between now..

I wouldn't be human if I didn't get upset but the difference is I refuse to stop living my life now! I no longer let this condition define who I am or what I do!

I have booked to climb Kilimanjaro in Feb as I want to do these once in a lifetime experiences while I am healthy and able! Then one day I can look back on my life when I'm older and say I lived every day as if it was my last.. ❤️

I will be raising money for the Huntington's Disease Association and the climb will be dedicated to my dad, and his life.

From the time of diagnosis dad needed support to live. Over night we had become his care system! I would take turns with my mum and siblings to look after him each day. In the beginning it was just small things like making him food, ironing his clothes and giving him his medication. There would be an endless supply of tea and biscuits haha☕🍪 it was basically his own personal cafe! 

As things progressed, he began to need more support. He was struggling to walk with a stick and end up needing a wheelchair full-time.

The choice for him to go into a care home 2 years ago was the hardest decision to make as a family but he wasn't getting the level of care he needed at home. The staff have been absolutely amazing through the whole process over the last few years. Dad is still completely spoilt by the family, I guess some things never change.

The aim of the climb is to raise vital funds for the charity and hopefully bring more awareness about the condition. I know from our journey these last 12 years with dad, the understand people have about it is very limited. That has even been with medical professionals! On a number of occasions we have had to explain to them about it and how he needs to be cared for.

Dad is in the final stages of the illness and he's been through so much over the last few years. The climb is a dedication from me to his life and all he has been through, how much he's means to me.. and how he inspires me without even realising it.

He is my inspiration to continue to push through everything life throws at me, and for that I thank him!

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The Huntington's Disease Association supports anyone who is affected by Huntington's disease 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.

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If you are reading this and you been effected by Huntington's disease, I want you to know there is light at the end of the tunnel.

This is my advice to you, please don't put your life on hold. Go out every day and enjoy yourself, book that trip you have always wanted, learn that new hobby you have been putting off. Take the leap! 

Make a commitment to yourself to do something you love every week! Caring for a loved one can be hard but we need to make time for ourselves.. 💚

Thanks you in advance for any support and donations! 

Love always Robyn

XOX

05.10.22 - fundraising update so far 

THANK YOU TO EVERYONE 💚💚💚

I've spent the morning crying with joy and love! We have almost hit the fundraising target I set earlier this year, after an anonymous donation last night of $1000 with another 4 months to go!

I'm beyond overwhelmed with peoples generosity, love and support!

All the donations, shares, likes, comments and messages of support are amazing, I can't thank you enough..

It's so crazy to think all these people are donating money to a cause that is so important to me is mind-blowing! 

I have upped the limit on the just-giving account and there is still a link on my page to donate to Huntington's disease youth organisation.. 

Thank you for your continued support, 

Love always Robyn 💚💚💚

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