Airdrie family launch brain tumour charity fundraiser in memory of their son

Sarfraz and Nadia Majid, who are currently observing Ramadan, were devastated when their four-year-old son Rayhan died just four months after being diagnosed.

They are launching Remembering Rayhan with Brain Tumour Research to raise awareness and help find a cure. 

Rayhan on his birthday

Nadia spoke of how Rayhan eventually came to be diagnosed, saying that he was having persistent headaches and being sick. 

She said: “I just knew something wasn't right. Over the course of six weeks, I took Rayhan to see four different GPs on six separate occasions, but they refused to listen to my concerns.

"They would check his temperature, ears and throat and insist that nothing was wrong. On the final GP visit, a few days before diagnosis, the doctor tickled and played with Rayhan and made him laugh and giggle, concluding that he was perfectly ‘well in himself’ and there was no cause for concern.

"When I protested and described the severe headaches and vomiting symptoms I was seeing at home, the doctor suggested that maybe he needed glasses and to take him to the optician instead.”

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As Rayhan's sickness and headaches continued, a visit to A&E at Queen Elizabeth University Hospital in Glasgow led to Rayhan having more tests.

Rayhan

An MRI confirmed that Rayhan had a tumour.

Nadia added: "To receive this diagnosis sent us into complete shock, but we had to be strong for our child. Sarfraz and I were going outside and just breaking down and crying, and then we were back in the hospital room, singing songs, playing games, and smiling, and trying to keep the atmosphere upbeat for Rayhan.

"There was a complete clash of emotions.”

Surgeons were unable to remove all of Rayhan's tumour as it was touching the brainstem, and he later developed cerebellar mutism, which meant he could not walk, talk or eat. 

The aggression of the tumour meant Rayhan needed to undergo six weeks of radiotherapy and four months of chemotherapy. 

Rayhan with his older brother and little sister

Before his treatment began, doctors concluded that the tumour had regrown, along with two new tumours in his brain and a coating of cancer throughout the brain and spine known as leptomeningeal disease.

They had no choice but to carry on with the treatment plan. 

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Rayhan’s health deteriorated rapidly during the first course of chemotherapy, and he sadly died on April 7.

Rayhan with his mum and dad (Image: Brain Tumour Reasearch)

Nadia said: “Rayhan endured six weeks of radiotherapy and several harsh procedures and surgeries, one of which left him unable to speak or walk. He was on his first round of chemotherapy when he died.

"We were helpless and heartbroken as we watched our beautiful boy change from being once full of laughter and energy to becoming paralysed and unable to communicate or move.

“We don't feel angry that he died because we believe that was God's will and we were gifted with four-and-a-half years of a beautiful life with our Rayhan. However, we’re angry about all the head-shaking and negligence 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 tumour symptoms, and the lack of availability around alternative treatment options.

"We would not wish other families to go through what we did. The treatment was almost as cruel as the disease itself and this cannot be right so any improvement for patients diagnosed in the future is long overdue.”

Nadia and Sarfraz are remembering their son on the anniversary of his death with a day of prayer and reflection during Ramadan. 

Matthew Price, community development manager for Brain Tumour Research, said: “Our thoughts are with Rayhan’s family as they face another year without him.

"Losing a loved one at any age is terrible, but to lose a child when they should have a long life ahead of them must be agonising.

"We are grateful to Nadia and Sarfraz for setting up Remembering Rayhan to help make a difference for other families in the future.

“Rayhan’s story reminds us that just 12.5% of those diagnosed with a brain tumour survive beyond five years compared with an average of 50% across all cancers. We cannot allow this desperate situation to continue.

"Brain Tumour Research is determined to change outcomes for brain tumour patients and ultimately find a cure.”

Donations can be made to Brain Tumour Research by texting RAYHAN to 70085 to donate £5. Alternatively, you can donate online at https://www.braintumourresearch.org/donation/donate-now.