In Hope Stories
Just 1% of the national research spend has been allocated to this devastating disease
Sarah Atif was diagnosed
with a brain tumour, later identified as a diffuse midline glioma, in January after
experiencing problems with her eyesight and becoming lethargic. The
seven-year-old, from Harrow in North West London, underwent a shunt surgery and
a biopsy before having six weeks of radiotherapy. Her family is now crowdfunding
to enable her to access a clinical trial drug called ONC201 in either the
Netherlands, which she has been accepted onto, or France, where it would cost
less overall. Her post-radiotherapy scan will take place next month and it is
hoped she will be able to start this next course of treatment at the beginning
Here is Sarah’s story, as told by her mum Uroos …
Sarah’s very smart. She’s good at maths, likes to paint and has always made us laugh. Since she was about two, we’ve called her ‘the human jukebox’ because of the sounds she enjoys making. We have two other children, aged 10 and four, both boys, and they have medical problems of their own. Our eldest has an immunodeficiency, which he inherited from me, and our youngest is autistic. Sarah was always the healthiest in our family and is very protective of her younger brother – it’s amazing how a seven-year-old can take care of a four-year-old.
“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, London, on 27 January. 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. I took her as planned on 27 January and we were told they needed to do a CT scan because they thought her optic nerve had become swollen. They sent us to Northwick Park Hospital, which is located on the same campus. Sometime between 11pm and midnight, the doctor asked me to go into a separate room. He asked if I had any family there to support me, but my husband was at home with our sons. I didn’t know what was happening but he said he had to give me some bad news and proceeded to inform me that Sarah had a brain tumour. I assumed it could be resolved by her having surgery, but, sadly, I was wrong.
We were then transferred to the Great Ormond Street Hospital (GOSH), in Camden, for an MRI scan. It was our third medical facility in less than 24 hours. I was told Sarah’s tumour looked diffused, but she would need to have a biopsy to confirm. She also had a lot of swelling caused by a build-up of fluid in the brain known as hydrocephalus, for which she needed to have a shunt fitted. These two procedures were carried out during the same surgery on 31 January. Afterwards, Sarah’s right side stopped working. She had been experiencing some weakness but it was so much worse after the operation. This was attributed to a clot following a CT scan and she was given medication and put on an observation ward.
“After four days of physiotherapy, Sarah was discharged from hospital in a wheelchair.”
She 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. Once again, my husband stayed at home with our children. I had him on speakerphone as I met with the doctor. She gave us the horrible news of Sarah’s diagnosis, a highly aggressive diffuse midline glioma with H3 K27M mutation in the thalamus area of her brain. I had hoped she’d tell us about a surgery that would fix Sarah but instead she gave us a terminal diagnosis, which was highly distressing.
I felt dizzy with all that we had heard and called my sister, who is a doctor in Australia, so she could speak to the doctor about treatment options. She asked for the prognosis and was told it was very poor, which is something I’ll never forget. 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.
“My husband and I quickly made the decision to fight this disease all the way, so we set up a GoFundMe page to start collecting funds to help pay for Sarah to have treatment abroad.”
On 13 February, Sarah started a six-week course of radiotherapy at the University College London Hospital (UCLH). She did really well on it and at first her symptoms improved, but after three weeks, things changed. We noticed a decline in her health and a resurgence of her symptoms; the weakness in her right side, headaches and an unresponsiveness. She no longer understands Hindi when I speak it to her. When I reported this to GOSH, they did an early MRI and said it could be progression of her tumour or pseudoprogression caused by her treatment. Sarah was given dexamethasone steroids, which has improved things, but she needs to go back on hydrocortisone. It’s unknown whether her decline was caused by her tumour or by changing the steroids she was on previously, but her post-radiotherapy scan will take place on 11 May and we should know more then.
“One strange thing Sarah did start experiencing during her radiotherapy treatment was sudden and severe shivering.”
This can happen 10 to 12 times a day and when it does, we have to warm her hands or hold her tight to provide heat. Initially, it was thought this could be the result of epilepsy, but that wasn’t the case. It’s now thought this could be the result of her tumour pressing on the thalamus, the part of the brain that controls temperature, but there’s nothing anyone can do about it.
“Sarah knows she has a funny lump in her head, and she asks me how long it’s going to be there and when it’ll go away.”
She also worries that she’s going to be like this forever. We had to shave her hair because of the radiotherapy. She had long, black, shiny hair before that. I’ve ordered her a wig and hope it comes soon because, having put on weight because of the steroids and lost her hair, she looks in the mirror and says ‘Mum, I’m ugly’. She’s also desperate to go back to school.
“We spoke to a hospital in the US about a trial they were running using a drug called ONC201.”
It’s thought it can prolong life by killing cancer cells and may be more effective in patients with tumours like Sarah’s. However, the trial would have required a £200,000 deposit, so we have been directed to similar trials taking place closer to home. Unfortunately, the drug isn’t provided in the UK but it is in the Netherlands, where Sarah has been accepted, and in France, where we’re still hoping she will be. We estimate it will cost about £60,000 a month for her to have this treatment in the Netherlands and almost half that in France. We’re planning for her to start it at the beginning of June.
We’ve made up our minds to do whatever’s 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. There’s not really any time to reflect on everything that’s happening, we’re already in fight or flight mode. The days are slipping away and I’m running from one crisis to the next. My husband works and is a proud man. He was hesitant about setting up the crowding page, but I told him the only thing that matters is Sarah’s health and he agreed.
“For those who have already donated, we’re extremely grateful for your support.”
The response we’ve had has been unexpected and overwhelming. Sadly, we will need more to put Sarah though the treatment so I would urge anyone who can help to please do so at www.gofundme.com/f/6hsbx-help-save-sarah.
“We’re a close-knit family and the thought of losing Sarah to this cruel disease is unbearable.”
Brain tumours are indiscriminate; they can affect anyone at any age. What’s more, they kill more children and adults under the age of 40 than any other cancer... yet just 1% of the national spend on cancer research has been allocated to this devastating disease.
Brain Tumour Research is determined to change this.
If you have been touched by Sarah’s story you may like to make a donation via www.braintumourresearch.org/donate or leave a gift in your will via www.braintumourresearch.org/legacy
Together we will find a cure