In Our Hearts Stories
Less than 20% of those diagnosed with a brain tumour survive beyond five years
Doted on by his older siblings, baby Ronnie was just three months old when he was diagnosed with a brain tumour. He underwent surgery but passed away not long after his first birthday in December 1990. Almost 27 years later he is much-missed and remembered every day by his brothers and sisters including those he never got to meet.
“Mum never got over her loss, she found it hard to say her final goodbyes. The night she passed away in January 2013 of multi-organ failure we all whispered in her ear that she was going to be with Ronnie again. Mum’s funeral brought everything flooding back to me. I can recall clear as day when we gathered to say goodbye to Ronnie, the tiny little coffin, and wondering how to make sense of it all. The lives of us all were changed by our loss at such a young age although it brought us together as a family.”
Ronnie’s story is told by his sister Janine:
I was nine-years-old when Ronnie was born. We were living in Gillingham in Dorset at the time. I had an older brother Andrew, who was 14, and a younger sister Leanne who was 7. Ronnie made four of us and we loved him so much. I was very excited to have a baby to dote on, we were all extremely protective of him and I loved to help out changing and dressing him in his lovely little outfits.
He was just three months old when my mum and dad discovered something was wrong. Ronnie wasn’t achieving the normal developmental milestones and alarm bells started to ring. He underwent tests and was diagnosed with a brain tumour.
Mum was the one to break the news to us. Leanne, Andrew and I sat down on the bed as she told us that Ronnie wasn’t very well and was going to die. It was obviously a shock, we were all so young to cope with such awful news.
Despite the risks, our parents opted for surgery. They had been told that, with or without treatment, Ronnie’s condition was terminal. They knew of the risks during the operation, they just wanted to do their best and for him to have as good a quality of life as possible for as long as possible.
Happily, he came out of the surgery really well and defied the odds by living beyond his first birthday. We had family in Scotland and went up to stay for what seemed like a long time although I expect it was no more than a few weeks. Mum and dad bought Ronnie up to be with us and everyone got to meet him which was nice.
Time was so precious. It is now 27 years since Ronnie died and so much has happened. The one thing that hasn’t changed is that he remains a part of our lives and will never be forgotten. My mum passed away in January 2013 and my daughter, who was born exactly a year later, is named Elizabeth after the Nanny she never got to meet. I will talk to my daughter about her Uncle Ronnie, as he remains a part of our lives and will do so forever.
Becoming a mother made me think about how things must have been for mum. She was coping with the terminal illness and the death of her much-loved baby whilst looking after us and my dad. After Ronnie died, she went on to have another three children Adam, Matthew and Rohana and to this day, we all talk about Ronnie.
When Elizabeth was born, it also made me reflect on how it must have been for my mum to lose her baby. I became extremely anxious about my own child. Mum never got over her loss, she found it hard to say her final goodbyes and kept Ronnie’s ashes with her at home. The night my mum passed away in January 2013 we all whispered in her ear that she was going to be with Ronnie again.
Mum’s funeral brought everything flooding back to me. I can recall clear as day when we gathered to say goodbye to Ronnie, the tiny little coffin, and wondering how to make sense of it all. The lives of us all were changed by our loss at such a young age although it brought us together as a family.
In April 2017 I ran the London Marathon for Brain Tumour Research. Despite an injury, I was determined to finish and thought of Ronnie and my mum every step of the way. It is so distressing to learn that brain tumours kill more children and adults under the age of 40 than any other cancer yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
I hope that babies born now have better treatment options than Ronnie although I know the statistics are stark and we are still such a long way from knowing enough about brain tumours and, ultimately, how to cure them.
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