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In Our Hearts Stories

Less than 20% of those diagnosed with a brain tumour survive beyond five years

Sophie-Hélène Lewis

Sophie-Hélène was a fun-loving four-year-old who loved to sing and dance. But, just a few weeks after her diagnosis with a diffuse intrinsic pontine glioma (DIPG), she couldn’t walk unaided and soon lost her ability to talk. She spent her final days in Rainbows Children’s Hospice, Loughborough, and passed away peacefully in her mum Victoria’s arms, listening to her favourite song ‘Let It Go’, four months after falling ill.

“In shock, horror and disbelief I questioned the medical staff. I didn’t understand how I could possibly tell my beautiful little daughter the news. I was worried that she would stay fully aware of everything around her as she lost control of her body.”

Here is Sophie-Hélène’s story, as told by her mum Victoria…

I was living in Paris in 2013, when the sonographer told me I was having a little girl, and I was overjoyed. He told me she would have long thin feet and would grow up to be a dancer.

When Sophie-Hélène was born, she was the daughter I always longed for. A lovely and perfect little girl, with gorgeous blonde hair, who I dreamed of taking to the ballet. I looked forward to us enjoying shopping trips together and sharing that special mother-daughter bond.

Always happy and full of joy from a young age, people were drawn to Sophie-Hélène and she loved to dance, perform and sing.  She was highly intelligent, extremely sociable and great fun to be around.

Upon returning to live in Nottingham, when Sophie-Hélène was nine months old, she attended a pre-school which she loved.  However, she wished for September to come around so she could join her big brother at the local primary school. She was excited to go shopping for her school uniform and so was I.

In May 2018 Sophie-Hélène fell down her dad’s stairs and broke her left arm. It was to be the day that changed our lives forever. I arrived at the Queen’s Medical Centre to meet her, where a doctor rushed out to see me to say they had found something on Sophie-Hélène’s brain and that they would need to carry out some further tests. I was so worried the fall had caused some bleeding or bruising to her brain, but I could never have contemplated what was coming around the corner.

Sophie-Hélène was admitted to hospital and within two weeks she was diagnosed with a diffuse intrinsic pontine glioma (DIPG) and she was given a life expectancy of nine months. My head was spinning, I had so many questions and didn’t know where to turn. In shock, horror and disbelief I questioned the staff. I didn’t understand how I could possibly tell my beautiful little Sophie-Hélène the news. I was worried that she would stay fully aware of everything around her as she lost control of her body.

Within a few weeks, Sophie-Hélène had gone from being this strong, fun-loving four-year-old, who loved to ballet dance around the living room, to a child who was no longer able to walk unaided. She had double vision and, with no strength in her left side, her body was limited.  She had to pick up her left arm with her right whenever she wanted to move it.  After a few more weeks, she lost the ability to chew and had to be fed soft foods. Her speech was affected so much that I had to use a pointing board on the worse days to help her make choices.

Sophie-Hélène had radiotherapy, which was extremely intrusive. I would have to leave her crying while she was put under general anaesthetic to be fitted with her radiotherapy mask. When she came round, she had delusions and suffered from paranoia. She went through the trauma of radiotherapy every day for two and a half weeks.

This only gave us a couple of weeks to play in the garden and enjoy the sunshine together before Sophie-Hélène started vomiting and she couldn’t stop. We soon discovered the radiotherapy hadn’t shrunk the tumour, it had caused her brain to swell from a potentially fatal condition called hydrocephalus. A shunt needed to be fitted to her brain to drain the fluid, but this became blocked, causing horrific pain for my little girl. After a few traumatic weeks in hospital we were transferred to Rainbows Children’s Hospice, which provided end-of-life care.

The team at Rainbows were remarkable, to all of us. They made such a difference to our lives. The way they looked after us and dealt with Sophie-Hélène’s pain was an inspiration. For a few nights, we were lucky enough to bring Sophie-Hélène home. She loved being able to catch up with her friends, her family and her beloved animals.

On 24 September, at 11:50am, Sophie-Hélène passed away at the hospice, in my arms, listening to her favourite song, ‘Let it Go’ from the Disney musical Frozen.

Sophie-Hélène is an inspiration. We all enjoyed a wonderful four and a half years together, and she made a huge difference to the world around her. Her life was worth it, she taught us all such valuable lessons and I would give anything to have her back again.

Victoria Lewis
December 2018


Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.

Brain Tumour Research is determined to change this.

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The views or opinions expressed within are not necessarily those of Brain Tumour Research. This content has been shared for information purposes only. Brain Tumour Research does not recommend or endorse any particular treatment. If you have or suspect you may have a health problem, you should consult your doctor or other suitably qualified medical professional. Our member charity brainstrust can provide additional information on treatment options.

Sophie-Helene Lewis