Clarke Lister, 10, collapsed outside his family home in Peterlee on June 15, 1996. Minutes earlier, he had been watching football – the game he loved.
He died on June 17, 1996, and mum Carole Lister, 66, has passionately fought to help people with brain haemorrhages ever since.
She set up the Clarke Lister Brain Haemorrhage Research Foundation in 1997 and the foundation has made amazing strides in her son’s memory.
Among its many achievements, it has helped to fund research into brain haemorrhages and appointed a district nurse to support survivors in their homes.
It has also supported a programme of genetic research on hundreds of families which is thought to have saved at least two lives.
She said: “Throughout all of this, Clarke has been our inspiration. We can’t bring him back but in his name we have always said we hope to make a difference.
"If we can save a life, we feel he may not have died in vain.”
Today was a time for reflection and Carole said: “We will take time to reflect as a family. You had to have lost a child to know the pain, no-one else does.”
She described Clarke as ‘a great character. He was very sensible and very caring.”
Clarke’s organs were donated to four people and he carried his own donor card. Carole added: “That was Clarke’s decision. We were sitting at home having tea and he said that if anything happened to him he wanted his organs to be donated. We have been privileged to meet two of the recipients.”
The 25th anniversary of Clarke’s death comes in the same week as the delayed Euro 2020 competition continues and with England and Scotland due to play each other on Friday.
Carole added: “The Euros bring it back every time. For many years, we could never watch the Euros but we will watch it and we will watch it with pride.
"We can bear it now but we bear it because we like football and because Clarke liked football.”
Every part of Carole’s work for the foundation is voluntary and she said: “The question I always get asked is ‘how do you do it? I always say ‘another year.”
The Clarke Lister Brain Haemorrhage Research Foundation is also behind an annual netball tournament which was launched to mark the anniversary of her son’s death.
It has taken place in the grounds of Dyke House Sports and Technology College to raise funds for the foundation. It was put on hold because of the pandemic but Carole is hoping it can return next year.
In the meantime, another aspect of the foundation is the Clarke Lister Feel Good Centre in Seaham, to support people who have a neurological conditions and to enhance their quality of life.
It has been closed due to the pandemic but there are hopes that it could open soon.