Watching a child endure cancer treatment is something no parent should ever have to experience. During Sophie’s treatment, Charlotte witnessed first-hand the devastating impact that chemotherapy and radiotherapy can have on a child’s body. While these treatments save lives, they were largely developed for adults and can leave children facing lifelong physical and emotional consequences.
Had Sophie survived, the long-term effects of her treatment would have been significant. Radiotherapy was delivered across her entire abdomen, causing irreversible damage to organs that had previously been healthy. For many children, survival is only part of the story. The long-term effects of treatment can last a lifetime, affecting education, fertility, growth, mobility, mental health and overall quality of life.
A major reason for the lack of progress in cancers such as rhabdomyosarcoma is the chronic underfunding of childhood cancer research. Compared to adult cancers, there are far fewer scientists and researchers working in this field, largely because funding opportunities are limited. Childhood cancers are rarely linked to lifestyle or environmental factors, yet they continue to receive a disproportionately small share of cancer research investment.
Sophie’s Legacy believes that children deserve better.
And a genuine opportunity to be cured without facing a lifetime of treatment-related complications.
Just ten days after Sophie died, Charlotte met with her local MP, Dame Caroline Dinenage, and asked for her help to drive meaningful change for children with cancer and their families.
That conversation marked the beginning of a campaign that would ultimately reach the highest levels of government.
In April 2022, thanks to the determination of Dame Caroline and the support of Sophie’s Legacy, the first-ever parliamentary debate dedicated solely to childhood cancer was held in the House of Commons. On 26 April 2022, MPs from across the political spectrum came together to discuss the urgent need for improvements in childhood cancer care and research. Twenty-two MPs shared the stories of children and families affected by cancer, highlighting both the successes and the challenges facing young patients across the UK.
What followed was two years of relentless campaigning. Charlotte met with ministers, clinicians, researchers, hospitals and families, continually ensuring that children’s voices remained at the centre of the conversation.
In April 2024, after sustained campaigning by Sophie’s Legacy, Dame Caroline Dinenage and many others across the childhood cancer community, the UK Government announced the creation of the Children and Young People’s Cancer Taskforce.
The taskforce brought together leading experts in paediatric oncology, researchers, scientists, clinicians, philanthropists, charities, patients, parents and childhood cancer survivors. Together, they were tasked with developing a national strategy to improve outcomes for children and young people affected by cancer.
Its objectives were ambitious and long overdue:
For the first time, there was a clear commitment to developing a dedicated national plan focused entirely on children and young people with cancer.
In September 2024, following the General Election, the newly elected Government paused the taskforce.
For many families, this felt like a devastating setback.
Charlotte immediately challenged the decision and sought answers. Working alongside Dame Caroline Dinenage, she secured a meeting with Health Secretary Wes Streeting and senior officials from the Department of Health and Social Care.
In November 2024, Charlotte and Caroline travelled to Westminster to make the case for why the taskforce must continue.
After a 45-minute meeting, Wes Streeting agreed to restart the Children and Young People’s Cancer Taskforce.
It was a significant victory, not only for Sophie’s Legacy, but for every family affected by childhood cancer.
The first meeting of the reinstated taskforce took place in March 2025.
Sub-groups were established to focus on the key priorities that would shape the future of childhood cancer care.
Charlotte was appointed to the main taskforce and was also invited to chair the Patient Voice Group, ensuring that the experiences of children, young people, survivors and families remained central to every decision and recommendation.
Over the following months, she participated in regular meetings, working alongside experts from across healthcare, research and government to ensure that the realities faced by families were fully reflected in the final recommendations.
The work of the taskforce became an important contributor to the Government’s wider cancer strategy and ensured that childhood cancer would no longer be overlooked within national policy discussions.
In February 2026, the Government published the Children and Young People’s Cancer Plan.
Seeing this long-awaited plan finally released was a hugely significant moment.
It demonstrated that the voices of children, young people and families had been heard. It showed that years of campaigning, collaboration and determination had translated into national action.
The plan set out a clear ambition to improve childhood cancer outcomes, strengthen research, support earlier diagnosis, enhance access to treatment and improve the overall experience of children and young people receiving cancer care.
While there is still much work to do, the publication of the plan marked one of the most important milestones in Sophie’s Legacy’s history.
We are incredibly proud that one little girl’s story helped create a national movement for change.
Sophie dreamed of a world where children received better care, where families were listened to, and where fewer children would have to endure what she experienced.
Today, those aspirations are influencing decision-makers at the very highest levels of government.
But our work is not finished.
We will continue campaigning for greater investment in childhood cancer research, faster diagnoses, safer and more effective treatments, and improved support for every child and family affected by cancer.
Every child deserves the best possible chance of survival.
And every child who survives deserves the best possible quality of life.
That is the future Sophie wanted. It is the future we continue to fight for every day.
Did you know that childhood cancer is the number one killer of children with 1 in 320 children diagnosed with cancer by the age of 20 years? Currently, only 3% of all public-cancer funding is directed towards child-specific cancer diseases. They deserve better…
Sophie wanted the following things changed and this will be her legacy in memory of a remarkable young girl who touched so many lives.
During Sophie’s many hospital stays, we came to understand the vital role play specialists play on children’s hospital wards.
Sophie was passionate about improving hospital food for children. She described it as “disgusting”—a powerful statement from a child who genuinely loved food.
Feeding parents of children in hospital was one of Sophie’s top priorities. She never understood why a parent staying with their sick child wasn’t also provided a meal.
Childhood cancer is the number one cause of death by disease in children under 15, yet there are no dedicated training courses on paediatric cancer for health professionals.
Childhood cancers are rarely linked to lifestyle or environmental factors, yet this area continues to receive the least amount of funding and research attention.
