Grieving mom calls for brain tumor research funding after death of her 4-year-old son

 By Hamish Morrison via SWNS

A grieving mother is calling for more funding for brain tumor research after her four-year-old son tragically died from the disease.

Rayhan Majid, of Airdrie, Scotlan, sadly died on April,7 2018, just four months after he was diagnosed with a killer growth on his brain.

Mom-of-three Nadia, 44, a business analyst and husband Sarfraz were given one devastating diagnosis after another as doctors tried to save their son’s life.

Nadia claimed his symptoms - constant headaches and vomiting - were dismissed by GPs when he went through neurological tests.

“I just knew something wasn't right, so I took him to the doctors, but they were not very helpful," she said.

"They would tickle and play with him, and he would laugh and giggle.

"Rayhan would pass the neurological tests with flying colors, and the doctors said he was absolutely fine. 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.”

She admitted that in order to be taken seriously Sarfraz exaggerated Rayhan’s symptoms when he took his son to A&E on December 12 2017, where doctors performed an MRI scan which revealed a three by four-centimeter growth on his cerebellum.

“We were so desperate and worried they would not take us seriously that Sarfraz exaggerated his symptoms," Nadia said.

“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. 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.”

On December 15, Rayhan underwent a 10-hour operation, but surgeons found they could not remove the tumor in its entirety because it was touching the brainstem.

He had also developed a condition called hydrocephalus - a build-up of fluid around the brain - which resulted in medics inserting a drain.

This failed and Rayhan had to undergo major surgery to have a shunt fitted.

After the operation, he was found to have developed cerebellar mutism - meaning he was unable to walk or talk.

A few days later, Nadia and Sarfraz were told the heartbreaking news that the tumor - classed as a grade three medulloblastoma - would result in their son having to undergo six weeks of radiotherapy and four months of chemotherapy.

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

He had also developed leptomeningeal disease, which is similar to a “coating” of cancer covering his brain and spine.

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

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

A pre-chemotherapy MRI scan showed very little change from Rayhan’s previous scan.

He was slowly becoming paralyzed and, by this point, was walking with a stoop, could not bear weight on his left and was losing use of his arms and fingers.

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

“Rayhan’s temperature began to spike, his oxygen levels dropped, and he started having an allergic reaction to one of the chemotherapy drugs," Nadia said.

“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 with his loving parents by his side.

“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," Nadia said.

“However, we’re angry about all the head-shaking from the doctors and how long it took to get a diagnosis.

“We can’t reconcile the lack of basic awareness around his very obvious brain tumor 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 tumor patients.

“We want to honor Rayhan and continue his legacy by raising awareness of brain tumors. 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.”

The family are being supported by their local MP Anum Qaisar-Javed, who raised the issue at Prime Minister’s Questions .

“Any life lost to cancer is devastating but the loss of a child is a tragedy most parents wish never to experience," Qaisar-Javed said.

“Since losing her son Rayhan, Nadia has worked bravely to raise awareness of child brain tumors and fight for increased funding and research into the field.

“Brain tumors 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 tumors.

“I am proud to support this cause and am honored 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 tumors.”

Brain tumors kill more children and adults under the age of 40 than any other cancer, yet historically just one percent of the national spend on cancer research has been allocated to this devastating disease, according to Brain Tumor Research.

“This is such a devastating story and we are so very sorry to hear of another premature brain tumor loss," saidHugh Adams, the charity’s head of stakeholder relations for Brain Tumour Research.

"Brain tumors 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 tumors, as this is how we will find more effective treatments for brain tumor patients and, ultimately, a cure.

“Our thanks to Anum for questioning the Prime Minister and fighting alongside us and Rayhan’s family at the highest level.”