Andy Smith, a 44-year-old NHS worker from Hertfordshire, will be taking part in this year’s Royal Parks Half Marathon for The Brain Tumour Charity in memory of his eight-year-old daughter, Emily, who died just 11 days after being diagnosed with an incurable brain tumour whilst on a family holiday in 2022.

Emily, described by her Mum, Sarah, as ‘the sunshine in every room’, showed no obvious symptoms in the lead-up to her diagnosis - no sickness, headaches or eye problems - only mild tiredness that her family had put down to a busy summer of ballet shows, drama class exhibitions and a big family wedding, at which she was a bridesmaid.

On the 28th July 2022, Emily woke up ‘with a strange feeling in her arm and began walking with a bit of a limp’, though she carried on ‘playing merrily with her older brother, Harry and could still run around’. After ringing 111 for some advice, Emily went for an appointment at the nearest hospital, during which blood tests ‘came back clear after a full examination’. With ‘doctors not overly concerned’ with Emily’s symptoms, it was recommended she be sent home - this was until a final doctor suggested an MRI scan ‘for everyone’s peace of mind’, which ‘revealed a tumour deep in Emily’s brain’.

Andy describes the days that followed as ‘unbearably traumatic’, in which ‘the horror of what was growing inside Emily’s brain became apparent’. In the early hours of August 2nd, Emily became incredibly distressed and started violently throwing up as the tumour began to bleed, increasing pressure on her brain until she slipped into a coma. Emily was subsequently rushed into emergency surgery, but her parents were given the news that will stay with them forever: ‘It was too late - the tumour had taken hold and there was nothing more that could be done. Emily was going to die.’

Emily was put on palliative care and never woke up again, dying in her parents arms on the 8th August 2022, just 11 days after diagnosis. Reflecting on that night, Andy says: “Me and my wife Sarah, were left numb with shock, trauma, and disbelief. Utterly heartbroken to the point where it physically hurt’.

He continues: ‘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 that followed, Andy and Sarah set up ‘Emily’s Fund’ within The Brain Tumour Charity, the world’s leading charity dedicated to funding research and raising awareness of brain tumours. Both parents were shocked to learn that ‘brain cancer is the biggest killer of children and adults under 40, and yet receives less than 3% of the national spend on cancer research’.

Speaking on this, Andy said: “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.” 

Since 2023, Andy, alongside friends and family, has raised over £100,000 for the charity - this includes Emily’s brother, Harry, who received a Points of Light Award from the Prime Minister, as well as a British Citizen Youth Award at Westminster Place, as a result of his incredible fundraising efforts.

In 2023 Harry climbed Scafell Pike, cycled 75km from Addenbrooke's hospital to the family’s home (in memory of the journey Emily was unable to make), and swam a whole mile in an incredible triathlon effort. In 2024 he swam a whole marathon by swimming a mile a day, and this year he completed a duathlon by cycling 80km before running 8km, marking 88km in total to combine both Emily’s age and the date she died. Harry also carried a 23kg weighted vest during the 8km run, representing Emily’s weight when she died. His parents describe him as a ‘true inspiration’.

Andy will be running this year’s Royal Parks Half Marathon to raise further funds for the charity, which he described as being ‘a great support’ to his family since Emily’s death. He’ll be running alongside Emily’s uncle, Jonny,  with both wearing a weighted vest matching Emily’s weight throughout in hope of ‘carrying her to the finish line’.

Looking ahead to race-day, Andy said: ‘I just want to make Emily proud. 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.’

When asked what advice he would give to someone going through something similar, Andy said:
‘Losing a child is the worst thing you can ever imagine as a parent. It’s still unbelievable to me that she is not here and that this is forever. We’ve had a lot of grief and bereavement counselling and it would not be an exaggeration to say that her guidance and support saved us, particularly in those first few months after Emily died - I would recommend this to any parent who has lost a child. You have to talk about it.

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 donate to Andy’s cause, please visit his fundraising page

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