A Malaysian family is facing a devastating medical battle as their four-year-old son, Aqra Rizki Yuraimi, fights Stage 4 neuroblastoma at UKM Specialist Children’s Hospital. The aggressive disease has caused a tumour to grow behind the child’s eyes, leaving him unable to sit up or move freely without risking internal bleeding.

According to his father, Yuraimi, the condition began with what appeared to be a simple fever late last year. Medication offered brief relief, but new symptoms soon appeared: swelling of the stomach, rapid weight loss, and a change in the shape of the child’s eyes. Hospital tests confirmed the diagnosis that changed their world overnight.

“We were told there was a tumour behind his eyes. At that moment, everything stopped,” the father explained. “I used to carry him to the park. Now I help him adjust his oxygen tube. It is painful to watch him struggle to open his eyes.”

Aqra’s mother, Nurul, described the emotional toll of the journey. “When he asks why his head hurts, I have no answer. I can only hold him. Some days, he won’t speak at all because the pain is too much,” she said.

Doctors have started an intensive chemotherapy schedule, but specialists believe that immunotherapy using Dinutuximab (Unituxin®) offers the strongest chance of extending Aqra’s life and controlling the cancer. The treatment, however, is costly, estimated at over S$100,000.

The family says they have already exhausted savings and sold belongings to cover early-stage treatment. Yuraimi, once employed full-time as a telco technician, lost his job due to repeated hospital visits and now works delivering food to keep up with daily expenses.

“In the past, he would run into my arms laughing,” the father said. “Now he lies on hospital sheets, trying not to move because it could hurt him more. I watch him sleep and I hope tomorrow brings something better.”

Nurul added that seeing her son’s personality change has been one of the hardest parts of the journey. “He loved asking questions, talking about the sky and the stars. Today, he asks if he will still be here to celebrate his next birthday. Those words stay with me.”

Medical staff say Aqra continues to respond to chemotherapy, but immunotherapy is urgently needed to improve survival prospects.

The parents hope that by sharing their story publicly, more people will understand the pressure placed on families facing rare childhood cancers. “We know the road ahead is long,” the father said. “But we also know our son wants to live. We are not giving up.”

The family confirmed that all financial support received will be directed to UKM Specialist Children’s Hospital for Aqra’s treatment programme.

They say their only goal now is to give their son a future beyond the hospital walls—a chance to run again, to grow again, and to return to the childhood that illness has stolen.