(Edited version of the Mail on Sunday article published Dec 2023)

This is my cousin Harriet and me around 7. She died a few weeks ago. She was 51 and had Motor Neurone Disease. Her husband Pete died from cancer in May. They are survived by two wonderful daughters aged 14 and 16. We are bereft.

We grew up together. She was the sensible to my flighty, the country mouse to my town mouse. She became a nurse. She was a natural – caring, kind. She loved making things. Each Christmas we’d get jams or pickles. She and Pete made a loving home for their girls.

Seven years ago she got a diagnosis for her frozen shoulder. It was MND. It shocked and devastated everyone. She was 44. As a medical family we all knew what lay ahead. It was hard to find words to comfort her.

Her muscles began to fail. They moved to a bungalow. She got thinner and weaker. Two years ago Pete got diagnosed with pancreatic cancer. Two incurable conditions living in the same home, trying to hold on to the minutes of life as they slipped by. Making memories for the girls amongst the hospital appointments.

We said goodbye to Pete on a beautiful sunny day in May. Harriet was too weak to hug her children, but bore her heartbreak with incredible bravery.

I saw her at the end of October. She was still walking and talking. She was organising the girls’ diaries, planning holidays. She was the centre of their home, vitally alive.

She must have been frailer than we realised. She died suddenly and unexpectedly at the beginning of December. The day of her funeral was cold and grey.

I cannot get my head round how her daughters’ lives have collapsed in so short a time. Harriet had many friends and a close family who will love and support them. I feel deeply and darkly sad. Angry that modern medicine could do nothing to help either of them.

But I will take my cue from Harriet. She had a broad smile, a big laugh and an even bigger heart. We will remember her with smiles and laughter.

My heart goes out to everyone spending this time of year without someone they love.

If you can, please help end MND by donating to https://www.mndassociation.org/

Click here to read the Sunday Mail article Harriet, Me and MND