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 had problems with her vision and kept complaining she was tired, and her mum was growing concerned.
Sarah's teachers also raised the alarm when she started writing much bigger in her school books, and she was referred to hospital for an eye test. Mum Uroos told MyLondon: "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."
Sarah had a CT scan because it was thought her optic nerve had swollen. Doctors then told Uroos that Sarah had a brain tumour.
Sarah was transferred to the Great Ormond Street Hospital (GOSH). 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 after days of physiotherapy.
Sarah and her family (Image: Family Handout/Brain Tumour Research)
Uroos 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."
Sarah in a radiotherapy mask - she underwent a shunt surgery and a biopsy before having six weeks of radiotherapy
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 £60,000 a month in the Netherlands.
Doctors have agreed the best chance of prolonging her life lies in a clinical drug not yet available in the UK
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."
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.
