Scots couple's appeal to PM over tumour detection fails in death of their four-year-old son

Concerns have been raised that just 1% of the national spend on cancer research has been allocated to the devastating disease.

Mother Nadia Majid from Airdrie whose son died in April, 2018, said doctors ignored symptoms even though she knew there were serious issues after he suffered from bad headaches and sickness.

She says that before he was diagnosed the family took him to see four different GPs on six separate occasions over two months but would pass neurological tests with flying colours, and the doctors said he was absolutely fine.

It was only when Mrs Majid's husband Sarfraz decided to take their son to the Accident and Emergency department at the Queen Elizabeth University Hospital in Glasgow in December, 2017 that the tumour was discovered.

Mrs Majid, 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.

"The following day, Rayhan had an MRI scan which revealed a 3 by 4-centimetre mass in the cerebellum.

“We were in complete shock, but I had to be strong for our child. 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.”

After a 10-hour operation, a surgeon told the couple they could not remove all of the tumour because it was touching the brain stem.

He eventually needed chemotherapy but after his first session things began to go wrong and Rayhan appeared to have an allergic reaction to the drugs.

GRIEVING Scots parents are raising concerns with Boris Johnson over a lack of awareness, research and funding to prevent childhood cancers after the death of their four-year-old after just four months with a brain tumour.

SNP MP for Airdrie and Shotts Anum Qaisar-Javed is supporting the family by seeking to meet the Prime Minister following concerns from the Lanarkshire family that medical staff did not take young Rayhan Majid's symptoms seriously.

Rayhan a few days after brain surgery.

Concerns have been raised that just 1% of the national spend on cancer research has been allocated to the devastating disease.

Mother Nadia Majid from Airdrie whose son died in April, 2018, said doctors ignored symptoms even though she knew there were serious issues after he suffered from bad headaches and sickness.

She says that before he was diagnosed the family took him to see four different GPs on six separate occasions over two months but would pass neurological tests with flying colours, and the doctors said he was absolutely fine.

It was only when Mrs Majid's husband Sarfraz decided to take their son to the Accident and Emergency department at the Queen Elizabeth University Hospital in Glasgow in December, 2017 that the tumour was discovered.

Mrs Majid, 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.

"The following day, Rayhan had an MRI scan which revealed a 3 by 4-centimetre mass in the cerebellum.

“We were in complete shock, but I had to be strong for our child. 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.”

After a 10-hour operation, a surgeon told the couple they could not remove all of the tumour because it was touching the brain stem.

He eventually needed chemotherapy but after his first session things began to go wrong and Rayhan appeared to have an allergic reaction to the drugs.

His health continued to deteriorate, and he died at 4:22am on Saturday, April 7, 2019 with his parents by his side.

Mrs Majid who is working with the charity Brain Tumour Research to raise awareness 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.

Rayhan on his fourth birthday

“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."

Mrs Majid, also mum to Eliza, four, and Zakaria, 12, added: “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.”

The family are being backed by Ms Qaisar-Javed who has questioned the prime minister about how research and funding into childhood cancers can be improved on the family’s behalf at Prime Minister’s Questions.

She has followed this up with a written request for a meeting with Mr Johnson to discuss these issues.

Mrs Majid 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.

“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.”

Ms Qaisar-Javed said: “Any life lost to cancer is devastating but the loss of a child is a tragedy most parents wish never to experience. Since losing her son Rayhan, Nadia has worked bravely to raise awareness of child brain tumours and fight for increased funding and research into the field.

“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. It is vital that we increase funding for life-saving research to improve the outcomes for children and young people diagnosed with brain tumours.

“I am proud to support this cause and am honoured that Nadia has allowed me to share her story at Prime Minister Questions to highlight the importance of improving funding and research into child brain tumours.”

Hugh Adams, head of stakeholder relations for Brain Tumour Research said: “This is such a devastating story and we are so very sorry to hear of another premature brain tumour loss. Brain tumours are indiscriminate and can affect anyone at any age.

MP Anum Qaisar-Javed raises the case at Prime Minister's Questions

“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."

Mrs Majid who is working with the charity Brain Tumour Research to raise awareness 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.

“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."

Mrs Majid, also mum to Eliza, four, and Zakaria, 12, added: “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.”

The family are being backed by Ms Qaisar-Javed who has questioned the prime minister about how research and funding into childhood cancers can be improved on the family’s behalf at Prime Minister’s Questions.

She has followed this up with a written request for a meeting with Mr Johnson to discuss these issues.

Mrs Majid 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.

“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.”

Ms Qaisar-Javed said: “Any life lost to cancer is devastating but the loss of a child is a tragedy most parents wish never to experience. Since losing her son Rayhan, Nadia has worked bravely to raise awareness of child brain tumours and fight for increased funding and research into the field.

“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. It is vital that we increase funding for life-saving research to improve the outcomes for children and young people diagnosed with brain tumours.

“I am proud to support this cause and am honoured that Nadia has allowed me to share her story at Prime Minister Questions to highlight the importance of improving funding and research into child brain tumours.”

Hugh Adams, head of stakeholder relations for Brain Tumour Research said: “This is such a devastating story and we are so very sorry to hear of another premature brain tumour loss. Brain tumours are indiscriminate and can affect anyone at any age.

“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."