An Airdrie family will honor the anniversary of the death of their four-year-old son today, April 7, with a period of prayer and reflection as they mark his tragic loss.
Sarfraz and Nadia Majid, both devout Muslims currently observing the month of Ramadan, were devastated when Rayhan died in 2018, just four months after being diagnosed with a brain tumor.
The Majids are working with the charity Brain Tumor Research to raise awareness and are launching a fundraising group called Remembering Rayhan under the charity’s umbrella on the anniversary to help find a cure for this devastating disease.
The Lanarkshire Live app is available to download now.
Get all the news from your area – as well as features, entertainment, sport and the latest on Lanarkshire’s recovery from the coronavirus pandemic – straight to your fingertips, 24/7.
The free download features the latest breaking news and exclusive stories, and allows you to customize your page to the sections that matter most to you.
Head to the App Store and never miss a beat in Lanarkshire – iOS – Android
Rayhan, a huge fan of sports and transformers started to get bad headaches and was being sick in October 2017.
Nadia, mum also to four-year-old Eliza and Zakaria, 13, 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.”
Rayhan’s headaches and sickness were becoming continuous so, on December 12, having exhausted all other options, his parents took him to the accident and emergency department at the Queen Elizabeth University Hospital in Glasgow, where, thankfully, the doctors agreed that these symptoms were not normal for a four-year-old child and scheduled further tests.
It was there that Rayhan had an MRI scan which revealed a 3x4cm mass in the cerebellum.
Nadia said: “ 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 .”
Rayhan underwent a craniotomy, but surgeons were unable to remove all the tumor because it was by now touching the brainstem. Immediately after the surgery, Rayhan developed cerebellar mutism, a complication from surgery on this type of tumor in children, leaving him unable to speak, walk or eat.
Later he had a second surgery to have a shunt fitted to relieve a build-up of fluid in the brain known as hydrocephalus which had also developed due to the late diagnosis.
Just a few days later, Rayhan’s parents learned that the tumor was an aggressive grade 3 medulloblastoma and that their young son would need six weeks of radiotherapy and four months of chemotherapy, both at the highest doses permissible for his age.
However, even before Rayhan could start treatment, another MRI scan revealed the devastating news that the cancer had spread. The original tumor had regrown, along with two new tumors in the brain, along with a coating of cancer throughout the brain and spine known as leptomeningeal disease.
After completing six weeks of radiotherapy, with little to no effect on the advancing disease, Rayhan had his first chemotherapy session on April 2, but things started to go dramatically wrong shortly after the first round of drugs were administered.
Rayhan’s temperature spiked, his oxygen levels dropped and he started having an allergic reaction to one of the many chemotherapy drugs he had received that day.
The brave little boy’s health continued to deteriorate rapidly during the five-day course of treatment and he sadly passed away at 4.22am on April 7, in the arms of his loving parents.
Nadia said: “We don’t feel angry that he died because we believe that it 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.
Brain tumors kill more children and adults under the age of 40 than any other cancer, yet historically just one per cent of the national spend on cancer research has been allocated to this devastating disease.
Matthew Price, community development manager for Brain Tumor 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 agonizing. 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 per cent of those diagnosed with a brain tumor survive beyond five years, compared with an average of 50 per cent across all cancers.
“We cannot allow this desperate situation to continue. Brain Tumor Research is determined to change outcomes for brain tumor patients and ultimately find a cure.”
Text RAYHAN to 70085 to donate £5 to Brain Tumor Research; texts cost £5 plus one standard rate message.
Or you can donate online and give your reason as Remembering Rayhan.
* Don’t miss the latest headlines from around Lanarkshire. Sign up to our newsletters here.
And did you know Lanarkshire Live is on Facebook? Head on over and give us a like and share!
George Holan is chief editor at Plainsmen Post and has articles published in many notable publications in the last decade.