Huntington's breakthrough gives me hope - but sadly it comes too late for my dad

As soon as I finished with work on Wednesday and turned my phone back on, it blew up with messages. One of the cruellest and most devastating diseases - Huntington’s - has been successfully treated for the first time. A breakthrough, a word I'd been desperate to hear for what felt like for ever. Everyone close to me could see how massive this was.

- CARLY EVANS

After living in the shadow of this devastating disease for so long, it’s been hard to let hope in, even when it’s finally knocking at the door.

Huntington’s disease, what we call HD, doesn’t just touch your life; it consumes it. Most people don’t know what it is, or just how devastating it can be. But I’ve always known. I’ve lived with it all my life. My auntie died from it. My grandad, too. My dad is battling it right now, and I care for him. And me? I tested gene-positive almost five years ago now.

A life impacted by HD is like living under a storm you can’t escape. It strips away movement, memory, personality. It’s like dementia, Parkinson’s, and Motor Neurone Disease rolled into one cruel diagnosis.

So yes, hearing this news was overwhelming. As a gene carrier, I’m torn in two. There's a sadness so deep I can’t put it into words, knowing that it’s too late to help my dad. But there’s this newfound hope - for me. I have had so much anticipatory grief for my future in these last few years - where you grieve for someone who is still alive - and now there’s brightness amid the dark.