A Mother’s story

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

When Sophie-Hélène was born she was the daughter I always longed for. A beautiful and perfect little girl with gorgeous blonde curls 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 her young age, people were always drawn to Sophie-Hélène – 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 longed for September to come around so she could join her big brother at the local primary school. She was so excited to go shopping for her school uniform, and so was I.

 
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THE DAY OUR LIVES CHANGED

In May 2018 Sophie-Hélène fell down her dad’s stairs and broke her left arm. That day our lives changed forever. Upon arriving at the hospital to meet them, 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 there is no way I might have contemplated what was coming.

Sophie-Hélène was admitted to hospital and within two weeks she was diagnosed with a Diffuse Intrinsic Pontine Glioma (DIPG) – the fastest killing brain tumour in children aged 5 – 9, 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 couldn’t understand how I could possibly tell my beautiful little Sophie-Hélène that she would stay fully aware of everything around her as she loses 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, one side of her body was limited.  Sophie-Hélène 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 food 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.

 
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SOPHIE-HéLène IS NOT ALONE

In the UK, around 598 children and young people under the age of 19 are diagnosed with a brain tumour each year*.

Brain tumours are the chief cause of cancer deaths in children and young people, and they continue to kill more children and adults under the age of 40 than any other cancer**.

Sophie-Hélène was attacked by a rare and incurable type of tumour called DIPG. There are around 30 - 40 cases of this aggressive disease diagnosed every year in the UK, with a median life expectancy of around nine months.

Research offers the only real hope of dramatic improvements in the management and treatment of brain tumours. Over £500m is spent on cancer research in the UK every year, yet less than 2% is spent on brain tumours** – something the National Institute for Health Research is striving to change.

 
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SOPHIE-Hélène’S RAPID DECLINE

Sophie-Hélène tried radiotherapy, which was extremely intrusive – she was given a general anaesthetic and I would have to leave her crying while she was put to sleep for the radiotherapy mask. When she came round she reacted with delusions and suffered with paranoia. Sophie-Hélène 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 Sophie-Hélène’s brain to swell from a potentially fatal condition called hydrocephalus. A shunt needed to be fitted to her brain to drain the fluid, in Sophie-Hélène’s case we think that this blocked, causing horrific pain for my little girl. After a few traumatic weeks in hospital we were transferred to Rainbows – an end of life hospice.

From the moment we arrived at Rainbows we were offered peace and solace. The staff were amazing, and the support was like nothing I’ve ever experienced before. 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.

We were sometimes lucky enough to be able to bring Sophie-Hélène home a few nights. She loved being able to catch up with her friends, her family and her beloved animals. Home visits wouldn’t have been possible without the care and attention from the British Red Cross. They brought all the equipment to our home to make Sophie-Hélène’s wish possible. They were responsive, empathetic and so gracious in all the care and attention they brought.

 
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FOREVER IN MY HEART

After a relatively short battle with DIPG, Sophie-Hélène passed away after just four months – she never made the nine months we’d hoped for. On the 24th of September 2018, at 11:50am, Sophie-Hélène passed away at the hospice, whilst in my arms listening to her favourite song, Let it Go.

Sophie-Hélène is an inspiration. She’s the strongest person I’ve ever met. We all enjoyed a wonderful four and a half years together, and Sophie-Hélène 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.

I’ve decided to celebrate Sophie-Hélène’s life by throwing a ball. Sophie-Hélène showed so much zest in her character and a ball is the perfect opportunity to bring people together to celebrate the life of Sophie-Hélène. But it’s not just a party to celebrate the courageous spirit we’ve lost, it’s about making a difference towards stopping other children going through what Sophie-Hélène went through.

In 1962 Neil Armstrong, the first man to walk on the moon, lost his three year old daughter to DIPG – yet 56 years later little research has gone into DIPG and it is still no closer to finding a cure – I want to help change that.

 

TAKING A STAND

I want to raise much needed funds and awareness for Rainbows Hospice and DIPG Brain Tumour Research, taking place at the University of Nottingham. I’m hoping to raise £15,000 to support them and am hoping the ball will take a big step towards this.

Friends and family are also fundraising for this cause in other ways; we have coffee mornings planned, marathons will be run, we’re holding an auction and raffle at the ball, and are asking for donations wherever possible – any amount will make a difference.

I’m really appreciative of your support, and hope you’ll be able to join me at the ball.

Thank you
Victoria Lewis
Xxx


Sophie-Hélène Lewis

In loving memory
17/01/2014 - 24/09/2018

Make a donation

*https://www.thebraintumourcharity.org/understanding-brain-tumours/symptoms-and-information/childhood-brain-tumours/
**https://www.thebraintumourcharity.org/get-involved/why-we-need-your-support/the-statistics-about-brain-tumours/