Mother who lost four-year-old son to brain tumour campaigns for research funding

A mother whose four-year-old son died four months after being diagnosed with a brain tumour is campaigning for more funding and research into the disease.

Nadia Majid said she does not want other families to go through what her own did and is working with the charity Brain Tumour Research to raise awareness about this area of cancer research and continue her son’s legacy.

Four-year-old Rayhan (pictured with his parents) started to get bad headaches and was being sick in October 2017 and Mrs Majid took him to four different GPs on six separate occasions, but said doctors told her he was fine.

The boy’s parents became so concerned that her husband Sarfraz took Rayhan to the accident and emergency department at the Royal Hospital for Children in Glasgow on December 12.

Mrs Majid, from Airdrie in North Lanarkshire, 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.”

The following day, Rayhan had an MRI scan which revealed a three by four centimetre mass in the cerebellum, a part of the brain.

On December 15, the little boy underwent a 10-hour operation, however the surgeon told his parents all of the tumour could not be removed because it was touching the brainstem.

A few days later his parents were told that the tumour was a grade three medulloblastoma and that he needed six weeks of radiotherapy and four months of chemotherapy.

A pre-radiotherapy MRI scan revealed the original tumour had grown back, along with two new tumours in his brain.

On April 2, Rayhan had his first chemotherapy session but his mother said that his temperature began to spike, his oxygen levels dropped, and he started having an allergic reaction to one of the chemotherapy drugs.

Medical staff administered antibiotics but her son’s health continued to deteriorate, and he died at 4.22am on April 7 2018 with his parents by his side.

Mrs Majid 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.”

She added: “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.”

Mrs Majid, who has two other children aged four and 12, said: “We want to honour Rayhan and continue his legacy by raising awareness of brain tumours.

“We hope that a day comes where no parent has to stare down the barrel of such a poor prognosis for their child ever again.”

Mrs Majid and her family are being supported by local MP Anum Qaisar-Javed, who has raised the issue of how research and funding into childhood cancers can be improved at Prime Minister’s Questions.

The MP said: “Brain tumours kill more children and adults under the age of 40 than any other cancer and it is essential that we do all we can to support young people and families who are living with these illnesses.”

Hugh Adams, head of stakeholder relations for Brain Tumour Research, said: “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.”

A UK Government spokesman said: “Brain cancer can be a devastating disease and our thoughts go out to those experiencing it, as well as the loved ones supporting them.

“We have redoubled our efforts to find therapies and new treatments and in 2018 committed more than £40 million of funding over five years which is supporting brain cancer research.

“We are supporting the research community working on brain cancer by funding every single eligible research request in this area and providing research training for practising doctors.”

NHS Greater Glasgow and Clyde and NHS Lanarkshire have been asked for comment.

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