A family has finished a huge 192-mile coast-to-coast challenge across the UK in memory of their “bright and creative” daughter and sister who died of a brain tumour at the age of just eight.
Emily Smith tragically died in August 2022 within two weeks of her diagnosis after an MRI revealed she had a brain tumour.
Now, on the anniversary of losing her, her parents Sarah and Andy Smith, and brother, Harry, 12, have finished their enormous challenge of walking from St Bees, Cumbria to Robin Hood’s Bay, North Yorkshire, raising more than £11,000 for Tom’s Trust, the children’s brain tumour charity that has been helping the family through their grief.
Crossing three national parks – The Lake District, The Yorkshire Dales and The North York Moors – the family hiked over steep hills and climbed nearly 29,000ft over 17 days.
Sarah, who works as a teacher, said: “It was really tough at times, we had to support each other through some low moments but we were determined to do it. The route is very steep in parts too and up and over many fells. We worked out that in total we climbed nearly the height of Everest! For Harry to complete that too at age 12 is amazing. We are so proud of him. We knew it would be an endurance challenge and it really was. A metaphor for our lives now without Emily.
“Fundraising far exceeded our expectations and we’ve raised over £11,000 now and it’s still going! So many people donated along the route too which was heartwarming. We’re glad we can give back to Tom’s Trust, a charity that has really helped us this year and makes such a difference in people’s lives when they’re facing a brain tumour diagnosis.”
Tom’s Trust provides mental health support to families following a child’s brain tumour diagnosis, through dedicated clinical psychologists placed within the hospital setting.
Andy, who works as a physiotherapist, said: “The walk marks a year after losing Emily, and a year of having Angela, our Tom’s Trust psychologist, as well. Angela has been the most amazing support to us throughout the worst time of our lives, helping us try to bear the unbearable loss of our daughter. Angela has helped us both understand grief and how we can learn to live alongside our love and grief for Emily as we navigate life without her. She has worked with us to help process the traumatic events around Emily’s rapid decline and has spent much-needed time with Harry too. It helps that Angela had met Emily on the ward before she died and also spent time with us both, and Harry, before Emily’s collapse. Harry trusts her and can talk to her and she really understands him, they have a special bond. She rings us weekly still. We are truly grateful to Tom’s Trust for identifying the need for mental health support for children and families affected by brain tumours. We don’t know how we could have faced this without their help.”
Emily’s school had just broken up for the summer holidays at the end of July 2022 and the family, from St Albans, Herts, were on a holiday on the Suffolk coast when she became unable to use her right arm normally. It didn’t hurt or seem to bother her much to begin with, with Emily describing it to her parents as feeling “unusual”. The next day it had spread to her right leg too.
The worried parents called 111 and they were sent to their nearest hospital. Although Emily’s symptoms were still mild, they decided to do an MRI scan that evening for reassurance. It was then that doctors found a brain tumour. The family were told Emily had none of the typical brain tumour symptoms, such as sickness and headaches, because of where her tumour was located, deep in her brain.
Emily was transferred to Addenbrooke’s Hospital, Cambridge, and there was a plan for surgery to remove as much of the tumour as they could, with post-op radiotherapy to slow the growth down. The Smith family were told the tumour was cancerous and in a very difficult part of the brain to get to.
On the children’s ward, Emily could still walk with help and remained determined and independent, wanting to play in the garden on the ward and in the playroom doing painting, all the while waiting for her planned surgery to take place at the end of the week.
But while in hospital, Emily deteriorated very quickly as the tumour started to bleed and swell, causing hydrocephalus. On 2nd August 2022, she collapsed and was rushed to theatre for emergency surgery to try and manage the swelling and drain the fluid on her brain. A biopsy was taken too which confirmed the type of tumour; a diffuse midline glioma. Emily spent her remaining days in the Paediatric Intensive Care Unit and never woke up after her surgery.
Sarah said: “She died in our arms on the 8th of August 2022. The physical pain of our hearts breaking was like nothing we had ever felt before. Nothing anyone could have done would have changed Emily’s outcome ultimately because of the type of tumour that she had. 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 even conquered Snowdon on 1st June 2022 with boundless energy and enthusiasm. She was a bridesmaid at her uncle’s wedding on 16th July, and she had the best time riding on a carousel and taking photos in the photobooth that day with the family. 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.
“Emily was a very popular girl, she left school for the summer with nothing wrong. She just skipped out of school one day and then didn’t come back, which has been hard for her friends to come to terms with too.
“Harry misses Emily desperately. He is an entertainer by nature, and she was his audience. They had a special relationship. Harry is very focused on making a difference and her death not being in vain.”
The Smith family were sadly hurt in a car accident in July this year, making the coast-to-coast walk an even bigger challenge for them.
Debs Mitchell, Co-Founder of Tom’s Trust, said: “It was losing our son Tom to a brain tumour that highlighted the desperate need for proper mental health support to be given to families facing a brain tumour, including during the devastating bereavement process that sadly a third of these families have to endure.
“The Smiths really are the most amazing family and I’m in awe of everything they’ve achieved in Emily’s memory. Thanks to them eight families will get the vital support needed following a brain tumour diagnosis.”