Matthew James — or ‘MJ’ as we knew him — was 11 when he died from intestinal failure, remembered always for his beaming smile, gentle soul, and love for life’s simple joys.

MJ had the most beautiful, beaming smile, and his kind, gentle and pure soul was clear for all to see. Despite the fact he was living with a lot of pain and fighting a battle every day, He loved life and the people around him. The simple things like cuddles  on the sofa, the wind in his face, and the occasional ‘milky way’ chocolate bar! He was the bravest boy I’ll ever know and he taught me so much about what’s important in life.

MJ developed brain damage due to complications at birth that led to oxygen deprivation. He was delivered via emergency C-section on the 22 November 2011, a month earlier than we expected. After a traumatic birth he was whisked away to be resuscitated. I never heard him cry. I didn’t get to hold him. He was later diagnosed with Cerebral Palsy. For MJ, it was severe and meant he would be completely immobile, develop epilepsy, be nonverbal, require a feeding tube, be doubly incontinent, and fully dependent for all his care needs. My husband and I were a young couple now navigating life with our first child — who had complex medical needs and a life-limiting condition, meaning he would most likely die young.

Matthew’s health began to deteriorate and it became obvious that he was more comfortable without food in his stomach. Even though he was acutely unwell, it was the most content we had seen him in years. The GI consultant spoke to us frankly about the complexity of gut dysmotility in children like Matthew. She explained what gut dystonia was — and suddenly, a lot made sense. We appreciated her honesty. It helped us understand. His GI doctor was the first consultant in almost three years who listened when I said Matthew was in pain. His distress and behaviour weren’t dismissed as part of his learning disability or frustration. It was the first time I didn’t have to shout to be heard.

It became clear that Matthew’s difficulties were severe and we began serious discussions about moving towards palliative care and bringing in CHAS (Children’s Hospices Across Scotland) for support. It was a lot to process. I remember feeling confused by the sudden serious change. The move to palliative care meant the absolute focus was managing symptoms and helping Matthew be as comfortable as possible — to enjoy the days he had left. I feel sad we weren’t moved to palliative care sooner. He deserved that level of attention and input. He was just a little boy. He shouldn’t have suffered for so long.

Our palliative nurse, Louise, introduced herself gently. She was always there when we needed her, never pushing, giving us the information we needed while allowing space to process it all — something I now deeply appreciate.

By summer 2023, Matthew was increasingly unwell and harder to manage. I had become robotic in my carer role, going through the motions. One morning, I looked at him and saw how sick he looked. It hit me: my little boy is dying. The gravity of it was enormous. I texted Louise that day — a Saturday — and she phoned shortly after. I wailed down the line, and somehow, she calmed and comforted me. Over the next weeks, Louise got to know us and Matthew. She was always there during hospital admissions, making sure things were right for us. It was the first time his care felt truly holistic and coordinated.

I didn’t realise it at the time, but the CHAS team were giving us the tools and confidence to care for Matthew as he approached end of life. We were led by Matthew, and they were led by us. They were gentle, never pushing, allowing us to make decisions when the time was right. CHAS gave us the gift of letting Matthew die at home, where he was happiest, surrounded by love. Somehow, they made something so scary and unthinkable into something quite beautiful for our family.

His birth was traumatic, his life brought challenges — but his death was peaceful and calm. Just the three of us at the end, as it was in the beginning. He deserved that. We take huge comfort in it.

MJ’s palliative journey was very short and very intense — not quite five months from when we were told to when he died. It was stressful, emotional, and very sad — but also the most important time of his life. Probably the only time we felt Matthew’s life truly mattered. His life was important

By Melanie Dyer – Matthews Mum. UK.