A family is set to walk 192 miles in a huge 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, are taking on the challenge of walking from St Bees, Cumbria to Robin Hood’s Bay, North Yorkshire, to raise money for Tom’s Trust, the children’s brain tumour charity that has been helping the family through their grief.
The charity 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: “With Sarah being a teacher and this being Harry’s first summer holiday without Emily, we see this challenge as a focus away from the pain of losing her during the long six-week break. 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. We never wanted to live this life without her, but we need to learn how to live our lives now, and this gives us a small step towards doing that.
“Being outdoors is important to us as a family and it’s helpful to us being back in nature. We’ve got fond memories of the Lake District, where we had several family holidays, so we can picture Emily walking along with us. We have been back to the Lakes a couple of times already and found countless heart-shaped stones in the paths which really felt like Emily joining us. It’s one of those special places where we all feel connected to her.
“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 due 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 on the Paediatric Intensive Care Unit and never woke up after her surgery.
Sarah said: “She died in our arms on the 8th 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.”
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 now while they recover. Starting on 11th August, they will be walking between 8-16 miles each day from the west side of Cumbria, through the mountains, across the Dales and Moors to the coast of North Yorkshire, which will take an estimated 17 days, with them finishing the challenge on 27th August.
Sarah said: “We’ve decided we’ll stay in some B&Bs where possible rather than so much camping along the route as we’re still recovering physically from the car accident. Harry is very active and fit. He’s recovered from the crash really well so he’s been back to school and playing football, but it’s the mental side for him which will be a challenge, keeping him entertained. We’ll have various family and friends joining us along the route, which will help. Our family have been so supportive. Harry has a lot of energy and inner strength so this is a great challenge for him, having to walk up to nine hours a day and the start of the walk is very hilly 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.”
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.
“Hearing stories like the Smiths’ only motivates our team further to ensure all families receive the support they need. Emily was clearly the most wonderful little girl, and we are so thankful to Sarah, Andy and Harry for supporting us in her memory. We are so honoured to be able to help them during the most difficult time for their family.”