3-year-old Raiyan Shafiq turns his head slowly from side to side while moving his hands gently. 26-year-old Junaidah, Raiyan’s mother, looks at him with a tear in her eye. While other 3-year-olds are out running and exploring, Raiyan lies in bed, hooked to a ventilator and a feeding tube attached to a machine.
3-year-old Mohammed Raiyan Shafiq turns his head slowly from side to side while moving his hands gently. 26-year-old Julaidah, Raiyan’s mother, looks at him with a tear in her eye while Nurrahidah, his 8-year-old sister, gently pats his hand. While other 3-year-olds are out running, exploring and teasing their older sisters, Raiyan lies in bed, hooked to a ventilator and a feeding tube attached to a machine.
2 years ago
It all began 2 years ago when Nurrahidah contracted the Hand, Foot and Mouth Disease (HFMD). Raiyan caught the virus from his sister and soon his condition became every mother’s nightmare. A change of GPs, constant fever and different medications became a routine. Celebrating his first birthday on April 29th 2006, Raiyan was warded after 2 days, in the ICU at National University Hospital (NUH). “The doctor advised us to prepare for the worst when the virus spread into the lungs. They had to make a hole in the lungs to draw out the water. I felt so numb at that point. I mean, I was watching my baby gasp for life when he should have been playing with his birthday presents,” recalls Julaidah tearing up.
Tuning herself to Raiyan’s condition, single mother Julaidah, together with her parents and sister, embarked upon making Raiyan as comfortable as possible. A room furnished with a television and a VCD player, a comfortable bed and colourful soft toys, the family tried to distract Raiyan from his painful condition. Then holding a partial job as a cashier, Julaidah watched the medical bills piling up. Although the family still believed in a miracle that would untie Raiyan from the painful web he was entangled in, they still could not shun away the possibility of Raiyan’s condition remaining the same.After the collapse of his lungs, an operation was conducted to make a tracking for the use of the ventilator. Also, a feeding tube was connected from the milk machine through his nose to his stomach. At the sight of the then one year old lying bedridden with these tubes, was too much to bear for Julaidah and her family. “Everyone’s world crashed. Raiyan was a hyperactive child and we were used to seeing him run around and now we were facing the harsh reality of watching him get weaker and just lying in one place. Even with the support of my parents and sister, it was still something I had to personally come to terms with and that took a while,” Julaidah whispers, wide-eyed.
A little ray of sunshine
This year, Julaidah’s sister, Suhaidah, read about a 13-month old child named Mohammed Hafiz, who was also affected by HFMD. The thought of Hafiz lying with wires attached to his skull was something Suhaidah realised no parent should not go through alone. Suhaidah contacted the reporter and shared with her Raiyan’s story, in order to let Hafiz’s family know they were not alone. Raiyan’s story was published in the papers on June 2nd of this year. Soon, they were introduced to Dr. Prem Pillay, a specialist, who visited Raiyan at home and proposed a surgery that would include inserting a pacemaker which would substitute the ventilator.
Looking after Raiyan
Raiyan’s future Raiyan is unable to make a sound or talk because of the vibrations that are cut off due to the tracking surgery. The only emotions that can be seen from him are silent crying when he is in pain, frowning when he gets bored and an occasional rare smile. Raiyan’s state forces at least one member of the family to be at home at all times. Rotating the duty of looking after him, Julaidah and Suhaidah and their mother have their hands full. Julaidah and her sister not only take care of Raiyan’s every need but they juggle a job at the same time. Currently a cashier at FICO Sports Hub, Julaidah rotates her working shift with caring for her son. Never complaining even for a moment about the exhaustion she feels, Julaidah appears to be burying all forms of emotion to keep herself mentally alert and physically present for her son as much as she can.
Today, little Raiyan sees a bleak future that involves multiple visits to the hospital, high dependency on people around him and complete immobility. However with the surgery that Dr. Pillay has proposed, Raiyan has an 80% chance of recovering. Although Dr. Pillay has generously waived off the cost of the surgery, Julaidah will still have to fork out for the pacemaker and hospital costs, which could amount to almost $75, 000.
Although her story has been published in the Straits Times and the Berita Harian, the donations have been meek. Everything and everybody is set for the surgery to take place and all that stands in the way is the money. So far, Julaidah has collected around $10, 000 and is appealing to the public to help her fulfill her dream of watching little Raiyan take his first steps all over again. As she waits, Julaidah wipes little Raiyan’s uncontrollable drool and with her other hand, covers her tear brimmed eyes.
If you would like to help Julaidah you can reach her directly at 81642963. theAsianparent team is also raising funds for the family, so if you would like to donate, you can drop us an email at [email protected], or reach us at 63442865.
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