Brave brain tumour survivor Ella, 12, hosts fundraiser to save more lives

A Sutton family is celebrating their daughter’s recovery from a life-threatening brain tumour by hosting a fundraiser for the Brain Tumour Charity.

Sid and Sally Bibby will don their bandannas with pride during the coffee and cake fundraiser at Sid Bibby’s Turf & Landscaping on March 2 – almost a decade after daughter Ella-Rose was diagnosed with the deadly disease.

For the first time, brave Ella, 12, has agreed to share her heartbreaking story in the hope it will help support other families in the same situation and raise awareness about brain tumours – the biggest cancer killer of children and adults under 40.

These days Ella lives life to the full, enjoying horse riding, sports, shopping and hanging out with friends.
But things could have been very different had her tumour not been discovered and removed in time.
Cause for alarm
Rewind to Father’s Day, June 15, 2008. What should have been a family celebration at The Anchor at Sutton Gault turned sour when it became apparent that all was not right right with Ella, then aged two. Throughout the meal, the toddler’s arm and hand were stuck to her head and she couldn’t move it, mum Sally said.
“We kept telling her to stop it and eat her dinner but it carried on throughout lunch. We put her to bed as usual and went to bed.”
The following day, Ella was doing a “weird thing with her arm” and wouldn’t wake up.
Sally was about to call a doctor but former neighbour Ron Harper advised her to call an ambulance immediately, suspecting a brain blockage.
First responder Simon Wicker arrived shortly after. Having worked on a brain unit for many years, he quickly realised that Ella needed urgent attention.
Sally says: “He was brilliant with us and really put us at ease… He even came up to see us on the ward several days later to see how we all were.
“Many months after Simon admitted that seeing Ella that day had affected him and he had to take a little time out of his day for a chat with some colleagues to make him feel better as he knew he was sending us off for bad news. We still keep in touch with Simon, we feel very lucky to have someone working in our area that is so special and a hero.”
The family was taken by ambulance to Addenbrooke’s Hospital in Cambridge, where Ella spent several days on a children’s ward.
“We thought the worst case was that Ella had epilepsy as her seizures were happening all day and night, the meds they gave her helped a bit but we could tell that the doctors were still looking for something.”
“Terrible” news
After days of tests, the family was summoned to see Ella’s consultant.
“The walk to his office was the hardest and longest walk we would make. At this point we knew by how the nurses were treating us that they knew we were walking into some terrible news.
“I still find it hard to talk about what happened in the consultant’s office. We came out with the news Ella had a brain tumour.”
The following days passed in a haze. Sally recalls the anxiety of doctors trying out different medication, of breaking the news to Ella’s brother James and sister Livvy, and of telling family members that Ella would be admitted to London’s Great Ormond Street Hospital.
As Ella’s tumour was slow-growing, the family got to go home in between hospital visits, carrying on with normal daily life – only now with the knowledge that the baby of the family had epilepsy and a brain tumour.
“Days turned into months with endless trips to GOSH for scans and appointments, GOSH were treating the brain tumour and Addenbrooke’s looked after her epilepsy.”
Sid and Sally wanted to keep things as normal as possible for Ella in between appointments, so the toddler returned to nursery and an Addenbrooke’s nurse advised staff on how best to look after her.
“A couple of times they had some horrible emergencies with Ella but they handled it well and we will always be thankful to them for letting her go to school and looking after her so well.”
Traumatic times
One day the family received the news they’d been dreading. Ella’s tumour had grown and had to be urgently removed.
The night before the life saving operation at GOSH is one the Bibbys will never forget.
“I don’t think any of us slept apart from Ella, who took everything in her stride. Nothing troubled her, even being put to sleep! She had got so good at it she didn’t need any numbing cream or anything – they could just put the needle in.
“The anaesthetist was very impressed with her, she was such a brave girl. Unlike her Mummy and Daddy who cried at most things!”
Waiting for her surgery to be over was heart wrenching. The couple recall weeping, nit picking at each other and staring at notice boards but not taking anything in.
“The time she should have come out came and went, the seconds turned into hours.”

Eventually the Bibbys were summoned to see their daughter. Before the operation they’d been warned that she’d lose a lot of feeling in her left arm and that even though this could be helped with physiotherapy, it may always be weak.
With that in mind, Sally recalls the euphoric surprise she got when the first thing little Ella did was squeeze her hand with her left hand.
“Our little fighter was going to be fine!”

After the operation, Ella was left with epilepsy and a stammer but after eight years, her fits had reduced so much that she could come off her medication.
A fighter through and through
Fast forward to 2018. Strong-minded Ella still receives therapy for her stammer but lives every moment to the full.
“She has good days and bad but she has ways of getting around it. Ella is amazing.”

Ella’s hoping to raise at least £300 for The Brain Tumour Charity, which funds lifesaving research as well as supporting people with brain tumours, through her Just Giving page.
The Bibbys are hosting a Bandanna and Bake session, providing coffee and cakes in exchange for donations to the charity, from 9.30am to 4pm on March 2, at Sid Bibby Turf & Landscaping, Ely Road, CB6 2AB.

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