Trigger warning: this blog contains references to suicide
In May, members of our Huntington's Disease Youth Voice (HDYV) are embarking on a tribute walk for their friend Liv, who they lost to suicide last year.
Liv was passionate about talking about Huntington's disease and raising awareness. She was an active member of the Huntington's disease community, contributing as an Ambassador, steer group member, and member of Huntington's Disease Youth Voice, as well as an Ambassador for HDYO.
Joe, Liv's friend and fellow member of HDYV, has spoken to us about why he, Charlotte and Megan are walking this year and what they hope to accomplish.
Liv was something special. There's no one else like Liv in this world, I'm convinced of that. I'm yet to meet someone who's even close to her. I only met Liv a handful of times in person, but we had countless phone calls, and Liv was genuine… she had a heart of gold, she would do anything for anyone. Even in her worst times, she'd check up on anyone else before she checked up on herself, but that's just who she was. Liv was a caring person, and she really did care about you, no matter what you'd done, no matter the situation, she would try her best and try her utmost to keep you on the straight and narrow and keep you out of trouble. I remember countless phone calls with her on a late night, either she would be telling me off or me telling her off, it would never just be a normal chat, but that's just because we cared about each other. And throughout that, we created such a friendship that lasted forever, and it will last forever.
How would you describe Liv to someone who didn't know her?
Ray of sunshine. It's got to be, there are no other words, just a bubbly ray of sunshine. She would light up the darkest room. Honestly, if you were around Liv, every cloud would disappear, and you'd just get the sunshine shining down on you.
What impact did Liv have on the people around her?
She brought the light; she was the laughter of the party. Everything went through Liv, the giggles, everything. She just didn't hold back on anything, honestly. Liv just came straight in, bang, full force and away she went. She was chatting with everyone, making friends, helping people open up, she was just so loving. And like I say, from the first moment when we went on that residential, we clicked and I could genuinely tell that she cared. She had a heart of gold and she was unbelievable. But there was one thing on that residential as well. She cannot make a good hot chocolate.
What are some of your favourite memories of Liv?
The one that sticks out to me is the Great British Bake Off that we did. Unfortunately, Liv ended up with me, and I'm not much of a cook. I just bang everything in the air fryer at home, so me trying to bake a cake with Liv, that has got to be one of the funniest memories ever. I think I ended up with icing all over my face. Liv was just a complete mess; she had a cold as well, bless her. So yeah, it was just an absolutely chaotic day, but it was just filled with laughter. And that was actually the last time I saw her in person. It was just because we hadn't seen each other in so long, we just clicked straight away again.
The Great British Bake Off event was actually in the group that brought Liv and me together, HDYV, which is to improve the support network for younger people impacted by Huntington's disease. We're taking our stories and putting them to work to change it for other people. What we didn't experience in our stories but wish we had, support-wise, that's what we're trying to do for the younger generation impacted by Huntington's disease.
Why is it important for you to walk in tribute to Liv?
Because it's something that was so close to Liv. She was really connected to the Huntington’s Disease Association; she did a lot of work. She did a Halloween walk, and that was kind of Liv's thing. She did a spooky walk in October to raise money for the Huntington’s Disease Association. So the walk reminds us of her; it's kind of like her thing. We want to do this to create a memory of Liv's walk and just show that her memory will last forever.
Where are you planning to walk?
Me, Megan and Charlotte are planning to walk up the three peaks, the Yorkshire Three Peaks. I'm not quite sure where they are exactly. They're in between the lakes, that's where I know. I'm not too good with geography, but I know they're in between the lakes and we're planning to climb all three peaks in one day.
What does it mean to you to be raising money in Liv's name?
It means the world, honestly. Just to have the privilege, out of all Liv's mates, to walk the Three Peaks in her name and raise money for her. It's a privilege, honestly, to represent her, and it's the least we could do. Liv has helped me so much in my Huntington's disease journey so far, so it's the least I could do, and to have that privilege, I feel honoured.
Is there anything you'd want people to know about why walks like this matter?
Doing this walk means getting out in the open with your mates, opening your mind up, seeing nature … relaxing and letting yourself have some time to breathe. Just get out in nature, connect with the world, see the beautiful side of Britain and let your mind go to peace and relax for the day.
#HDWalk
Has Joe’s story left you feeling inspired?
#HDWalk is a flexible and accessible walking challenge you can make your own in honour of your own Huntington’s journey, or to recognise the journey of someone you love. This is something that Joe, Charlotte and Megan have chosen to do in memory of their friend, Liv.
#HDWalk
Challenges
Walking with purpose - Ian's story
Fundraising