Airdrie mum demands more funding into brain cancer after 4-year-old son's death

Nadia Majid, 44, is working with the charity Brain Tumour Research after her son Rayhan died from a brain tumour in April 2018, only four months after being diagnosed.

Rayhan, a huge fan of sports and Transformers, started to get bad headaches and sickness in October 2017.

Nadia said: “I just knew something wasn't right, so I took him to the doctors, but they were not very helpful. They would tickle and play with him, and he would laugh and giggle. Rayhan would pass the neurological tests with flying colours, and the doctors said he was absolutely fine.

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“But Rayhan kept getting sick and his headaches were also increasing. Over the course of six weeks, I took him to see four different GPs on six separate occasions.”

In December, Nadia’s husband, Sarfraz, took Rayhan to the Accident and Emergency department at the Queen Elizabeth University Hospital in Glasgow, where an MRI scan revealed a 3 by 4-centimetre mass in the brain.

Nadia, a business analyst, said: “We were so desperate and worried they would not take us seriously that Sarfraz exaggerated his symptoms. Thankfully the medical staff there agreed that it was not normal for a four-year-old to be having headaches for this period of time.”

“We were in complete shock, but I had to be strong for our child,” she added. “Sarfraz and I were going outside and just breaking down and crying, and then we were in the room, singing songs, playing games, and laughing, and trying to keep the atmosphere upbeat. There was a complete clash of emotions.”

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A few days later, Rayhan underwent a 10-hour operation but surgeons were unable to remove the whole tumour, later revealed to be a grade-3 medulloblastoma, requiring six weeks of radiotherapy and four months of chemotherapy. 

Rayhan also developed hydrocephalus, a build-up of fluid around the brain, and cerebellar mutism, leaving him unable to speak or walk. A pre-radiotherapy MRI scan later revealed the original tumour had grown back, along with two new tumours in his brain. 

Nadia, also mum to Eliza, four, and Zakaria, 12, said: “In the few weeks prior to the scan, Rayhan’s original symptoms had re-appeared and, despite us repeatedly asking if the tumour could have returned, the doctors had assured us this was not possible in such a short space of time.

“When the results of the MRI came in, the doctors were shocked to see the tumour had returned, but we were shocked that so many medical professionals were not able to see this.”

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Rayhan was slowly becoming paralysed, started walking with a stoop, and couldn't bear weight on his legs, and he was losing use of his arms and fingers. 

On Monday 2 April, Rayhan had his first chemotherapy session, but things started to go wrong that evening.

Nadia said: “Rayhan’s temperature began to spike, his oxygen levels dropped, and he started having an allergic reaction to one of the chemotherapy drugs. The medical team was panicking as they did not know what was causing these symptoms, and promptly administered antibiotics.”

Rayhan’s health continued to deteriorate, and he died on April 7.

Nadia said: “We don't feel angry that he died because we believe that's God's plan and we were gifted with four-and-a-half years of a beautiful life with Rayhan. However, we’re angry about all the head-shaking from the doctors and how long it took to get a diagnosis.

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“We can’t reconcile the lack of basic awareness around his very obvious brain tumour symptoms, and the lack of availability around alternative treatment options. We would not wish other families to go through what we did. We know that so much work needs to be done to change the outcomes of brain tumour patients.”

Nadia and her family are now being supported by local MP Anum Qaisar-Javed who has questioned the prime minister Boris Johnson about how research and funding into childhood cancers can be improved on the family’s behalf.

Nadia said: “We are so grateful for her support and for raising much-needed awareness about the lack of improvement in diagnosis times and treatment options. We want to honour Rayhan and continue his legacy by raising awareness of brain tumours.”

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Brain tumours kill more children and adults under the age of 40 than any other cancer yet, Brain Tumour Research said, historically just 1% of the national spend on cancer research has been allocated to this devastating disease.

Hugh Adams, head of stakeholder relations for the charity said: “More must be done to develop treatments and improve outcomes for patients like Rayhan. We desperately need to increase investment in research into brain tumours, as this is how we will find more effective treatments for brain tumour patients and, ultimately, a cure.”

The charity is calling for a national annual spend of £35 million in order to improve survival rates and patient outcomes in line with other cancers such as breast cancer and leukaemia and is also campaigning for greater repurposing of drugs.

The £35 million a year funding would bring parity with other cancers such as breast and leukaemia.

This increased commitment would enable the research needed to accelerate the translation from laboratory discoveries into clinical trials and fast-track new therapies for this devastating disease.