Rayyan (in wheelchair) with his family during an outing.
PASSIONATE about robotics and coding, Rayyan Durrani Khairul Azhar, 12, is a cheerful, brilliant boy who has been winning top prizes at coding challenges since he was eight-years old.
All that changed for Rayyan, a pupil of SK Sungai Gelugor when he was diagnosed with a rare cancer: paediatric-type diffuse midline glioma (DMG) with a grade four tumour in March this year.
For the first time he could not take part in the Rero:Micro bit coding challenge which he had been joining since 2019.
His father Khairul Azhar Baba, 39, an entrepreneur, said Rayyan, who is the second of five children, wants to be a neurosurgeon.
“Rayyan told us that he wants to perform neurosurgery online by using robotics mechanisms.
“He was upset he could not take part in the Rero:Micro bit coding challenge this year because of his condition.”
Khairul said that on March 9, Rayyan fainted after two days of fever.
He was then admitted at a private hospital in Penang.
“An MRI revealed thalamic haemorrhage (bleeding) with hydrocephalus (excess fluid in the brain) and a ventriculo-peritoneal shunt was inserted.
“Rayyan made a rapid recovery after this procedure and was discharged.”
However, during an MRI on April 17, a tumour was detected in the pineal gland region (middle of the brain) with an extension to the mid-brain and third ventricle.
Another biopsy on June 20 confirmed Rayyan’s diagnosis.
His mother, Ista Zohra Suratin, 39, a staff nurse at a private hospital, said that these days Rayyan tires easily and sleeps more than usual.
“He has lost weight and has no appetite but is still in good spirits and is very cheerful and happy whenever his siblings are around.
“We are trying to get him the best treatment possible,” she said.
His parents are planning to take him to the Seoul National University Hospital, South Korea, for a new clinical trial involving the ONC201 drug.
Khairul said preparations are being made to take Rayyan there next month.
He said the new trial may be sponsored and will probably cover the medicine and treatment.
“However we still need funds for our travel costs, lodging, tests before enrolling for the trial and healthcare and hospitalisation costs.”
Khairul said Rayyan’s involvement in the new trial will cost RM189,000.
He said the Penang Education Department had helped raise RM131,409 for Rayyan.
“We are also getting some help from the Qaryah Masjid Jamek Jelutong, which has so far raised RM1,220.”
He said the mosque will be raising funds until Sept 15.
Those who wish to donate can contact the mosque at 04-280 4143 or its committee member Farzee at 018-942 2953.
For details on Rayyan’s condition, visit his Facebook page: Rayyan DMG Fighter.
