A bereaved father has detailed how his eight-year-old daughter died just 11 days after she was diagnosed with an incurable brain tumour.
Andy Smith, 44, will run this year’s Royal Parks Half Marathon in memory of Emily.
As well as fundraising in her memory, Mr Smith seeks to support the “mission” to treat the condition which led to her death.
Emily died in 2022, just 11 days after she was diagnosed with an incurable brain tumour while on a family holiday.
Her NHS worker dad, from Hertfordshire, will carry a 23kg weighted vest as he takes part in the central London race – the equivalent of Emily’s weight when she died – in hope of “carrying her to the finish line”.
Emily, described by her mum, Sarah, as “the sunshine in every room”, showed no obvious symptoms in the lead-up to her diagnosis.
She was only mildly tired, something her family put down to a busy summer in which she had taken part in ballet shows and drama class exhibitions, and had attended a big family wedding as a bridesmaid.
On July 28 2022, she woke up with what her parents described as “a strange feeling in her arm and began walking with a bit of a limp”, but she continued playing with her older brother Harry and could run around.
After her parents rang 111 for medical advice, Emily went for an appointment at the nearest hospital.
Doctors were not “overly concerned” with her symptoms, and blood tests came back clear, so it was recommended that she be sent home.
But the final doctor she saw suggested Emily have an MRI scan for the family’s peace of mind. This revealed a tumour deep within her brain.
The days that followed were “unbearably traumatic”, Mr Smith said, as “the horror of what was growing inside Emily’s brain became apparent”.
Just days later, on August 2, Emily became distressed and started vomiting.
Her tumour had begun to bleed and she subsequently slipped into a coma.
Though she was rushed into hospital for emergency surgery, her parents were told it was too late and nothing more could be done to help her.
Emily was put on palliative care and died on August 8 2022, just 11 days after diagnosis.
Both her parents were “left numb with shock, trauma, and disbelief” by that night, her dad said.
“Utterly heartbroken to the point where it physically hurt,” he added.
Mr Smith also said: “Emily was so full of life and now she is dead. Emily had her whole life ahead of her and now she’ll never live it. Our lives will never be the same again.
“Everyone thinks their own children are special, but Emily really was one of a kind. She was all the good things you can think of and none of the bad.”
In the years after her death, the couple set up Emily’s Fund within the Brain Tumour Charity, the world-leading charity dedicated to funding research into brain tumours.
While brain cancer is the biggest killer of children and adults under 40, it receives less than 3 per cent of the national spending on cancer research.
“Treatments have not progressed for decades – there are so many types of brain tumour that currently have no cure at all, so it’s vital that research continues,” Mr Smith said.
Since 2023, he has raised some £100,000 for the charity alongside his friends and family.
This includes his son, Emily’s brother Harry, who has received a Points of Light award from the Prime Minister and a British Citizen Youth Award to mark his fundraising efforts.
Among Harry’s fundraising efforts were a 2023 climb of Scafell Pike, England’s highest peak, a mile-a-day swim amounting to a marathon in 2024, and a duathlon this year: cycling 80km before running 8km, marking 88km in total to combine both Emily’s age and the date she died.
Mr Smith will run the Royal Parks Half Marathon in October to raise more money for the charity, alongside Emily’s uncle, Jonny.
Ahead of race day, Mr Smith said he just wanted to make his daughter proud, adding: “Whilst it’s too late for her, the mission is to raise more money, to give more hope to others, and provide better outcomes for other families.
“I’m going to be running with ‘Emily’s Dad’ on my vest, and I really love it when I hear people cheering for ‘Emily’s Dad!’ as I run past.”
Mr Smith said it was “still unbelievable” to him that Emily is “not here and that this is forever”.
Grief and bereavement counselling have been important to him and his family, he said, adding: “I would recommend this to any parent who has lost a child. You have to talk about it.”
Mr Smith continued: “It’s important to remember that grief is not a linear process where life gets easier or you ‘move on’. I would never want to.
“I always remind myself that this deep feeling of grief is proportionate to how much love we all have for Emily, so I’ll never allow the strength of that grief to fade.”
To support Mr Smith’s cause, click here.
