My Mum, My Sister and Huntington's / Luke's Story / Family Stories

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I’ve never really been someone who tells stories about what happens in my life. I’m more of a person who keeps things close to my heart. But when I was asked to tell my story about Huntington’s disease, I thought maybe it was time to let some of it out.

I think I was around 9 or 10 years old when I first started noticing that something about my mum was different.

At that age, I didn’t know anything about Huntington’s disease. I didn’t know what it was, what it could do, or what it would eventually mean for my family. I just thought that was how my mum was.

I remember asking my dad questions like, “Why is Mum always fidgeting?”

I noticed things without really understanding them.

One of the strongest memories I have is football. I’ve loved football for as long as I can remember and I’ve played since I was about seven. Whenever I scored a goal, I would look towards the side-line for my mum.

And I can still picture her now.

She would do this thing I can only describe as a sort of hand clap, with her legs in the air. 😂

To anyone else, it probably wouldn’t mean anything. To me, it was Mum celebrating her boy scoring a goal.

I was incredibly close to my mum. She was a huge part of my life, and those little memories are some of the ones I hold closest to my heart.

As I got older, I began to understand that the things I had noticed as a child weren’t simply “the way Mum was.” There was a reason for them.

Huntington’s disease.

I don’t even really like calling it a disease sometimes. I call it “this horrible thing,” because there are things, I want to say about it that I probably can’t put into words.

And now, Huntington’s has affected another person incredibly close to me.

My big sister, Sarah.

Sarah is someone I have always looked up to. When I think back to being younger, I have so many little memories of her that make me smile.

I remember going with her to pick her kids up from school. At the time, I probably didn’t think much of it. It was just something I did with my sister. But looking back now, those ordinary little moments mean so much more to me.

And there’s one memory involving Sarah that I don’t think I’ll ever forget.

I was pretending to be ill one day when, actually, there was absolutely nothing wrong with me. 😂

Somehow, Sarah knew.

I don’t know how she knew, but she did.

Before I knew what was happening, she had marched me round to the school.

I’ve never forgotten that. 😂

It’s funny how, when you’re younger, moments like that can feel annoying or embarrassing, but years later they become the memories you laugh about and treasure.

That was Sarah.

She has always had that no-shit attitude. She doesn’t take any nonsense, and she has always been someone who tackles whatever is in front of her head-on.

That is something I admire so much about her.

She is now having to face this horrible thing herself, and watching someone I love go through something that I have already seen affect my mum is incredibly difficult.

But when I look at my sister, I don’t just see Huntington’s.

I see Sarah.

I see my big sister.

The strong woman I have always looked up to.

The woman who used to march me round to school when she knew I was pretending to be ill. 😂

The woman who I have shared so many ordinary, funny and important memories with.

The woman who doesn’t back down.

The woman who faces things head-on.

And honestly, if I can be half as brave as my sister, I’ll be a happy man.

I don’t know exactly where this story will take me, and I’m not sure I’ll ever be able to explain everything I feel about Huntington’s disease.

But I do know this:

Huntington’s has taken things from my family, but it will never take away the memories I have of my mum.

It will never take away the little boy looking towards the side-line after scoring a goal, waiting to see his mum celebrating.

And it will never take away the memories I have of Sarah, the school runs, the laughs, and especially the day she caught me pretending to be ill. 😂

Most importantly, Huntington’s will never change how proud I am of my sister.

A personal note from Steve

Luke is Sarah’s younger brother and someone I have known for many years. Like so many men, he has often kept his feelings close to his heart, which makes me especially proud of him for sharing this.

Speaking openly about Huntington’s disease is never easy, particularly when it has affected so many people you love. By telling his story, Luke is giving a voice to experiences that many sons, brothers and men may recognise but struggle to express.

Thank you, Luke, for trusting me with your words on this platform and for choosing to speak up.