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Sophie’s wish was to make chemo easier.

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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 isn’t spoken enough as most people see the persons hair come back and in remission, yet they have health or psychological 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. We need to raise the profile of childhood cancer and incentives to find new treatments so that children like Sophie aren’t left to either die or a lifelong of health issues.

 

We are asking the government to create a Children and Young People’s Cancer Plan. It will bring together scientists, researchers, philanthropist, oncologists, parents, childhood cancer survivors and in the hope they can begin to change the future for these innocent children. 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.

 

Sophie’s Legacy managed to secure the first ever debate in the House of Commons on 26th April 2022 thanks to our MP Caroline Dinenage. It received cross party support with 22 MPs sharing stories of their constituents whose children were either in remission or sadly died from cancer. We were disappointed by the response from the Health Minister Maria Caulfield.

 

I have now had meetings with three Health Secretaries or Health ministers in 13 months. Firstly, Savid Javid in December 2022 (only 3 months after Sophie died), secondly Maria Caulfied in May 2022 and Steve Barclay in January 2023. We believe that the government has the ability to change the outcomes for children and young peoples cancer.

 

We have been asking the public to write to their MP and demand for changes – I really believe we can create this change if we keep pushing the government.

 

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

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