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It is so hard to ever explain truly how horrific it is to see the impact chemotherapy and radiotherapy has on your child. The treatment is designed for adults but given to children. This is why, in many cases, if children do survive, they are often left with lifelong issues as a result of their treatment. This should not be deemed a success or cure!

 

Had Sophie survived, we knew the long term side effects would have been extensive.  She had radiotherapy to her entire abdomen, and this did extensive damage to organs which were healthy prior to her treatment.

 

The reason why there has been no advances to treatment for cancers like Sophie’s is primarily due to funding, or the lack of it! There are not enough researchers or scientists taking an interest in childhood cancer – the majority tend to go into adults’ cancer. Childhood cancer research needs to be prioritised and incentives for new treatments increased. 

Unlike many adult cancers, children do not typically develop cancer because of lifestyle or environmental factors yet, this area still receives the least amount of funding and research. 

 

I met with our MP Caroline Dinenage ten days after Sophie died and begged her to help us to change things. She has been committed to pushing through our wishes ever since.

 

In April 2022, Sophie’s Legacy managed to secure the first ever debate in the House of Commons on 26th April 2022 thanks to Caroline's efforts. It received cross party support with 22 MPs sharing stories of their constituents whose children were either in remission or sadly died from cancer. 

 In April 2024, after two years of relentless campaigning by Charlotte and MP Dame Caroline Dinenage, the UK government announced the establishment of the Children and Young People Cancer Taskforce. The force unites experts in the field of paediatric cancer including scientists, researchers, philanthropists, oncologists, parents, and childhood cancer survivors with the common goal of saving lives and reducing the long-term impact of cancer. The Children and Young People’s Cancer Plan will encompass research, prompt diagnosis, world-class treatment, quality survivorship, and excellent patient experience.

Our children deserve so much more, more research, more funding, and a chance at being cured without lifelong problems.

Watch:

We deserve more...

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's Legacy

Sophie wanted the following things changed and this will be her legacy in memory of a remarkable young girl who touched so many lives.

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