The parents of an eight-year-old girl are hoping to raise awareness of brain tumours in children after their beloved daughter died in their arms.
Emily Smith, from St Albans, Hertfordshire, first began to notice there was something wrong with her right arm shortly after she broke up from school in July 2022, when the family were on a trip over the Suffolk coastline.
The feeling came on quickly - just weeks earlier she'd managed to conquer Snowdon with 'boundless energy and enthusiasm', but when the strange feeling in her arm started to spread Emily's parents, Sarah and Andy Smith, decided to ring 111.
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They were advised to go to hospital and Emily underwent an MRI scan, but the family were completely blindsided when they found out the results.
They learned Emily had a brain tumour, but its position deep in her brain meant that she hadn't experienced any of the typical brain tumour symptoms such as sickness and headaches.
From there, Emily’s condition rapidly deteriorated. Doctors planned a procedure to try and remove as much of the tumour as possible, but while waiting for her operation she collapsed as the tumour started to bleed and swell, causing a build-up of fluid on the brain.
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The young girl was taken into emergency surgery on 2 August, 2022, during which a biopsy confirmed her tumour was a diffuse midline glioma. She returned to the Paediatric Intensive Care Unit for six days after the emergency procedure, but sadly never woke up after her surgery and passed away in her parents' arms on 8 August, 2022.
"The physical pain of our hearts breaking was like nothing we had ever felt before," Sarah said of her daughter's death.
"Nothing anyone could have done would have changed Emily’s outcome ultimately because of the type of tumour that she had.
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"A diffuse midline glioma currently has no cure. Emily was incredibly bright, creative and loved playing her piano. She was a graceful ballet dancer, talented at drama, hiking, swimming and climbing.
"She was a kind friend to many and a loving daughter and sister to her older brother, Harry. She was the sunshine in our family.”
Andy added: "The type of tumour was just so unstable and aggressive but equally silent. The worst of the worst. It is difficult when you don’t get that time trying to do something to treat it.
"We wouldn’t have wanted her to have to suffer longer but in your mind you have a typical cancer story - a diagnosis and a period of treatment, coming to terms with things. Things can happen quickly but with Emily it was just so much quicker than that."
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One year on from her death, Emily's family are now trying to raise awareness for brain tumours in children by walking 192 miles in a coast-to-coast challenge in partnership with the charity Tom’s Trust, which works with families and young children who have experiences with brain tumours.
The challenge has only been made tougher after they experienced a car accident in July, but they're determined to go through with the venture which will take an estimated 17 days.
Andy said the family sees the challenge as 'a focus away from the pain of losing [Emily]' during the six-week summer break.
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"We wanted to use our summer holiday to do something like this; it makes it all so much more meaningful and purposeful. It feels like Emily’s going to be a part of it," he added.
The family has thanked Tom's Trust for their 'amazing support' in 'the worst time of their lives'.
You can donate to the family's fundraiser here.
Emily Brown