North London girl, 7, who struggled to see the board at school finds out she has terminal brain tumour
A seven-year-old who struggled to see the board at school and kept bumping into other children in the playground was told by doctors she had a lazy eye but actually had a terminal brain tumour. Sarah Atif, from Harrow, North London, had problems with her eyesight and kept complaining she was tired, and her mum Uroos was growing increasingly concerned.
Sarah’s teachers also raised the alarm when she started writing much bigger in her school books, and so she was referred to Moorfields Eye Hospital for an eye test. But it soon became clear that the problem was more serious than just her vision. Uroos said: “Up until December 2022, everything was perfect and Sarah was doing really well. It was after she had vision screening at school that everything changed. It was thought she was having problems with her eyesight and perhaps had a lazy eye, so I was given an appointment at Moorfields Eye Centre in Finsbury.
“Her teachers told me she had started writing much bigger than usual and she was complaining she couldn’t see the board. She also fell down after bumping into someone and said it was because she hadn’t been able to see them properly. I became increasingly concerned and called my GP, but I was told to wait for our upcoming appointment.
“In the week prior to that appointment, Sarah became increasingly lethargic. She constantly wanted to lie down and said she wasn’t feeling very well.”
Her mum took her to Moorfields as planned on 27 January where she was told Sarah needed a CT scan because it was thought her optic nerve had become swollen. Doctors at Northwick Park Hospital told Uroos shortly before midnight to go into a separate room, where they informed her that sadly Sarah had a brain tumour.
Sarah was transferred to the Great Ormond Street Hospital (GOSH), in Camden. She had developed hydrocephalus, a build-up of fluid in her brain that was putting pressure on it and causing it to swell. After having surgery, she became unable to use her right side and was treated for a blood clot. She was discharged from hospital in a wheelchair following four days of physiotherapy.
Uroos, who also has a son aged 10 with an immunodeficiency, and a son, aged four, who is autistic, said: “Sarah returned home a completely different person because the steroids she was taking made her robotic. Four days later, I was called into the hospital to discuss the results of her biopsy and given the horrible news of Sarah’s diagnosis.
“She has a highly aggressive diffuse midline glioma with H3 K27M mutation in the thalamus area of her brain. I had hoped the doctor would tell us about a surgery that would fix her but instead she gave us a terminal diagnosis, which was highly distressing.
“There’s a park outside GOSH where I sat for about an hour, despite it being very cold, trying to process all that I had been told and questioning why it was happening to us, to our Sarah.”
The family are now fundraising to try and get Sarah treatment abroad. In February, Sarah started radiotherapy at University College London Hospital (UCLH). At first her symptoms improved, but, after three weeks, the weakness in her right side returned and she began suffering from headaches. She also became unresponsive and unable to understand Hindi.
It is not yet known whether this is due to progression of her tumour but her doctors have agreed the best chance of prolonging her life lies in a clinical drug not yet available in the UK. They are hoping to get treatment elsewhere in Europe – which will cost an estimated £60,000 a month in the Netherlands.
Uroos, who is working with Brain Tumour Research to share her story, said: “We’ve made up our minds to do whatever is necessary to save Sarah, even if that means going abroad for treatment. If it doesn’t help, at least we will be satisfied that we did our best for her. We’re a close-knit family and the thought of losing Sarah to this cruel disease is unbearable.”
Brain tumours kill more children and adults under the age of 40 than any other cancer and in the UK, 16,000 people each year are diagnosed with a brain tumour To help fund Sarah’s treatment, go to: www.gofundme.com/f/6hsbx-help-save-sarah. To learn more about how to support those living with a brain tumour, you can visit Brain Tumour Research HERE.
