Heartbroken mum Elysee Cook, 30, from Leeds, is warning parents of the symptoms of a rare brain tumour, hoping other families can get an earlier diagnosis than her daughter Octavia
A heartbroken mum lost her six-year-old daughter after doctors dismissed her early symptoms of a brain tumour as a “lazy eye”.
Octavia Cook was just three-years-old when her mum noticed her eyes were drifting. She took her concerns to the GP, but was repeatedly turned away – delaying her beloved daughter’s critical diagnosis.
It was only when her eyes crossed completely that doctors sent her for an MRI, which revealed the awful truth – that little Octavia had an inoperable brain tumour. Mum Elysee Cook, 30, from Leeds, said: “We were told it could be a neurological issue and were referred for a scan, because they thought she’d need surgery. After the scan, three doctors came behind the curtain and told me it was cancer.
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“At the time, I worked in neurosurgery as an apprentice nurse, so I knew what the options were. I was thinking about next steps. But then we found out it was terminal.”
Despite the diagnosis, Octavia fought through radiotherapy, a trial drug, and repeated setbacks that left her physically floppy. Her tumour, a diffuse midline glioma, affected the brain stem and could not be cut out, with medication also ineffective.
Elysee said: “There was no way of getting rid of it. But the doctors told us that radiotherapy could shrink it, and thankfully it did. The neurosurgeon said it was a really large tumour and he was surprised she was still functioning so well. It just shows how strong she was. She would just carry on.”
Even during treatment, which started in October 2023, Octavia kept her spirits high, sometimes turning up in her Spiderman costume. But by the end of the year, she had lost many of her abilities. She died on August 12 this year, with her family cuddled up beside her.
Elysee said: “I get very frustrated when people say she died peacefully in her sleep, because she died fighting. She was a fun-loving girl who was very brave – a beautiful soul. I remember walking through Leeds city centre with her and it was really crowded.
“She made a beeline straight for a random person and gave them a big hug – and you could just tell they needed that hug. She was very compassionate, but also very determined.”
Staff at her school also paid tribute to the little girl’s spirit. The deputy head said: “Being with Octavia was like seeing everything for the first time – just as children should experience life.”
Octavia leaves behind her twin brother Edmund, who has faced health challenges after being born premature. Edmund had a bleed on the brain and is autistic and non-verbal. His family recently learned he is also experiencing seizures.
Friends and family are now rallying to give Octavia a farewell worthy of the courageous, loving girl she was.
A GoFundMe has already raised more than £2,500 of its £3,000 target to help cover funeral costs and ease the burden on her parents.
The family were supported by several charities during Octavia’s illness. Young Lives vs Cancer provided a support worker after diagnosis, while Candlelighters – the local NHS trust’s children’s cancer charity – helped the whole family with groups for siblings and grandparents.
Archie’s Caravan gave the family short breaks, where Octavia loved performing “Baby Shark” on stage during their holidays. And at Martin House hospice, where she died, staff helped the family in her final days.
Elysee now wants to raise awareness of the symptoms of diffuse midline glioma, which can include a lazy eye, slurred speech, difficulty swallowing, struggling to maintain balance, and drooping of one side of the face.
She said she wanted people to remember her daughter’s “determination”, adding: “Octavia was really inspirational, I wish more people were like her.”