Molly's Story of Love, Loss and Family

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My mum was diagnosed with Huntington's disease in 2009 when I was only eight years old. I wasn't told about her diagnosis until I was around 12. When I first found out, I didn't understand what Huntington's disease was. I was confused, overwhelmed, and felt completely alone.

At such a young age, I didn't know how to process what was happening to my family. My way of coping came out as what many people would have called "bad behaviour", and eventually I ended up in care. During that time, my dad became my mum's full-time carer.

In 2022, I moved back home to help my dad care for my mum. By then, she had been living with Huntington's disease for 12 years and was in the middle stages of the illness. Watching my dad care for my mum was nothing short of incredible. He made sure she had everything she wanted and needed. He was her rock, her comfort, and her biggest source of strength. I had the privilege of witnessing that love firsthand.

I helped whenever I could, but the truth is, my dad preferred to do most things himself. At 70 years old, he was my mum's real-life Superman.

In June 2022, we lost him.

I woke up that morning and found that he had passed away. In an instant, my entire life changed. Overnight, I went from being a daughter helping out to becoming my mum's full-time carer.

Those months were some of the hardest of my life. I was trying to navigate the overwhelming grief of losing my dad while also caring for my mum and somehow finding the strength to look after myself. I kept searching for a light at the end of the tunnel, but some days I couldn't see one. There were times when I genuinely didn't think I would make it through.

I cared for my mum at home for six months before she was admitted to hospital with COVID. Her health declined rapidly. We later discovered that her risk of choking had become extremely high, and she needed surgery to have a PEG feeding tube fitted.

After that, I made the heart breaking decision to move her into a care home.

It was not a decision I made lightly. For years afterwards, I battled with feelings of guilt. I felt as though I had let my dad down. I felt as though I had let my mum down. I felt weak.

Looking back now, I realise that decision was none of those things.

It was one of the most selfless things I have ever done.

The reality was that my mum needed a level of care that I could not provide on my own, no matter how much I loved her. By moving her into a care home, I gave her access to the specialist support and care she deserved. It wasn't giving up on her; it was making sure she was safe.

Now, in 2026, my mum is in the end stages of Huntington's disease. I visit her often. Some visits are good, and we share moments that I hold close to my heart. Others are incredibly difficult. On those days, I often leave in tears. I leave feeling guilty that I have to walk away while she stays behind, and that I get to step back into a version of normal life that she no longer can.

But despite everything, I wouldn't change our journey for the world.

It has been painful, heartbreaking, and at times unbearable. Yet it has also taught me lessons that will stay with me forever. It has taught me patience when things feel impossible, understanding when life feels unfair, and unconditional love in its purest form.

Most importantly, it has taught me to cherish every moment, because the moments we have with the people we love are never guaranteed.

And if there's one thing my mum and dad have taught me, it's that love isn't measured by the easy days. It's measured by showing up, again and again, even on the hardest ones.

Molly's Special Memories