Brave Sophie battled mitochondrial disease for most of her short life. Born in May 2016, she was a healthy baby, but as she got older alarm bells began to ring. As her health deteriorated, Sophie was diagnosed with MELAS, a type of mitochondrial disease, at only four years old.
To begin with, Sophie needed hearing aids, glasses, and then a PEG feeding tube. But as her health worsened, she experienced a cocktail of mitochondrial disease symptoms from heart problems, seizures and metabolic strokes to gut and kidney failure. Despite these challenges, Sophie never complained about her illness and her family recall fondly the smile she had on her face right up until the day she died. It was April 2024, and Sophie was just seven years old when she suffered respiratory failure and finally lost her battle with mitochondrial disease.
When Sophie’s classmates at Kempshott Junior School in Basingstoke learnt about her death, they wanted to pay tribute to their brave young friend. So, they set themselves the challenge of walking 7km – one for each year of Sophie’s too-short life – to spread the word about mitochondrial disease amongst family and friends, and to raise funds for The Lily Foundation, who have given the family support since Sophie’s diagnosis.
On Sunday 7th July, Sophie’s parents, Sarah and Steve, joined the children on their memorial walk, as did Sophie’s younger brother Roman, who kept everyone motivated to the very end. And as the group completed their walk through Old Down near Kempshott, a beautiful rainbow appeared in the sky above. Sophie was clearly watching over them.
The importance of raising awareness of mito disease
Sarah and Steve will forever be proud of their little girl and the inspiration she was – and still is. They’re the first to acknowledge the importance of raising awareness of mitochondrial disease, and the work of The Lily Foundation, especially during World Mitochondrial Disease Week.
“It was great to see her classmates pay tribute to our wonderful Sophie and also learn about mitochondrial disease,” said Sarah. “Increasing awareness of mito is especially important to myself and Steve to ensure that no other family needs to go through what we have. We want to not only raise awareness of this terrible disease but also help make a difference. Together we can do that and hopefully one day find a cure. We also want to highlight the tremendous work of The Lily Foundation, who work tirelessly to offer hope to sufferers and their families, and strive to improve diagnostics and ultimately find effective treatments. We cannot thank them enough for the support they have offered us.”
While Sophie will be remembered for appreciating the little things in life, the legacy she leaves behind is huge, and this challenge in her honour has already raised over £3,000 for The Lily Foundation as well as making the local press in Basingstoke. By telling the stories of children like Sophie, and spreading the word about mitochondrial disease, together we can all help to raise awareness of this incurable condition and put mito on the map.