13 Aug 2024
A St Albans family is walking 73 miles along the Cumbria Way in memory of their daughter and sister who died of a brain tumour at the age of just eight.
Emily Smith tragically died in August 2022 two weeks after an MRI scan revealed she had a brain tumour.
Her family will be raising money for children’s brain tumour charity Tom’s Trust, whose clinical psychologist has supported them since Emily’s diagnosis.
The Cumbria Way begins in Ulverston, on the southern edge of the Lake District national park and ends in Carlisle in the North. The family started their walk on Saturday, two days after the second anniversary of Emily’s death and are set to finish this coming Saturday.
Joining Emily’s mum Sarah, dad Andy, and 13-year-old brother Harry are her auntie and uncle, Caroline and Johnny, and two cousins Fred, 11, and Barnaby, eight. The hiking team are also being supported by Emily’s nana and grandad.
Emily’s mum Sarah said: “We have found walking helpful since Emily died. We loved family walks and spending time in the Lake District when we could and we feel a real connection to her, doing something we know she loved. Having something like this to plan and train for has given us a real focus and purpose, whilst keeping Emily very much at the forefront of what we are doing.
“We have such fond memories of holidays in the Lakes, and the route the Cumbria Way takes weaves past many favourite spots of ours. Colwith Force, Skelwith Bridge and Elterwater were places we often went to, to see the waterfalls. We also have some trees planted in Memory Wood and the path goes right past them. It’s such a special place with stunning views over the fells we have climbed. We really feel Emily’s presence there.”
Emily’s dad Andy explained: “It can be really hard to look forward to things and find true joy when our lives have been so unfairly torn apart by brain cancer. We hope to find some solace in getting up in the mountains and that bit nearer heaven, to feel close to Emily. We will be trying our absolute best, so I guess we look forward to finishing the walk, knowing that we are making our girl proud of us all. It will be a particularly impressive achievement for the boys as it’s a very long way for little legs.”
The family want to raise as much as they can to help other families needing clinical psychological support following a diagnosis of a brain tumour. As well as the much-needed funds, they also want to raise awareness of how crucial this support is for families like them, and particularly the bereavement support.
Tom’s Trust is the UK’s only charity dedicated to providing mental health support to children and young people, with brain and other central nervous system tumours, and their families. They believe that every child with a brain tumour should have access to the mental health support that they need, as well as their loved ones.
Sarah added: “The support we have received from our Tom’s Trust clinical psychologist has been immeasurably helpful, guiding us to try and make sense of our world without Emily and to know how we can best support each other and Harry.”
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.”
You can sponsor the family’s challenge here: https://www.justgiving.com/page/andy-smith-1720032478822
Emily’s story
Emily’s school had just broken up for the summer holidays at the end of July 2022 and the family 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.
Her 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 August 2 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.”
