‘Bubble boy’ cuts his first birthday cake … and his last
By Chong Shin Yen
For the first time since he was born, little Chong Khai Aik got to celebrate his birthday.
Sitting on a hospital bed, he blew out the nine candles and cut his birthday cake.
Three weeks later, on 23 Apr, he slipped into unconsciousness.
On 11 May, he died.
Khai Aik had been suffering from severe combined immunodeficiency (SCID) – a rare genetic disorder better known as the ‘Bubble Boy’ disease.
He was born without an immune system and his body could not fight infections and diseases.
Khai Aik’s mother, Madam See Bee Choon, 39, said that her son was admitted to KK Women’s and Children’s Hospital in March for a fever that did not subside.
Madam See, a clerk, said: ‘With his birthday approaching, he asked me one day, ‘Mummy, what is it like to celebrate a birthday?’.
‘His question brought tears to my eyes and it dawned on me that we had never celebrated his birthday before.’
She said that the family did not celebrate birthdays, but didn’t say why.
She and her husband have been estranged for more than a year. They have another son and a daughter, who are healthy.
Madam See said: ‘In my heart, I knew we would never get the chance to let Khai Aik celebrate it if we didn’t do it this time.’
The New Paper first reported on the brave little boy last November.
He relied on an oxygen machine to help him breathe, and he hardly left home for fear of infections.
He had never gone to school.
That was why his birthday party at the hospital on 31 Mar was so special.
Those at the party included his elder siblings and his nanny’s family.
His nanny, Madam Loke Wai Heng, 55, had been looking after him since he was born.
Missing from the party that day was Khai Aik’s mother, who said she was busy and had arrived at the hospital only after the celebrations.
Khai Aik could not contain his excitement and told her all about it when she stepped into his room.
Madam See recalled: ‘Although he was weak, he had this happy glow on his face when he described how they sang the birthday song for him.’
Her daughter later told Madam See that Khai Aik had cried while cutting his birthday cake.
It was tears of joy.
Madam See said that the chocolate birthday cake – decorated with characters from the children’s television show Barney – was chosen by Khai Aik from a catalogue his nanny’s daughter had taken from a cake shop.
Even during the celebrations, the little boy did not forget the hospital’s staff members. ‘He told me he wanted to give a big piece of cake for his doctor and some for the nurses,’ Madam See said.
Along with the cake, Khai Aik had received many birthday presents, which included Lego sets, an MP4 player, soft toys and clothes.
‘He was beaming with joy while opening his presents one by one,’ Madam See said.
Khai Aik was diagnosed with the immune system disorder when he was two, and had been using a machine to breathe since he was three.
The only places he had been to were his nanny’s flat or the hospital.
He spent most of his days watching cartoons at his nanny’s home. His elder siblings, a 13-year-old sister and 11-year-old brother, would go to the nanny’s flat after school.
After work, Madam See would take her children home. Her husband does not live with them.
Khai Aik’s nanny still cannot accept his death.
Madam Loke said that Khai Aik was so close to her that he also called her ‘Mummy’.
She added: ‘I knew that with his condition, he would leave us at a young age. But my heart ached whenever I saw that he couldn’t do what other kids do.’
She recalled the day Khai Aik mentioned that he had never gone out for a meal.
‘He told me one day, ‘Mummy, I’ve never been to a restaurant to eat. I wonder what it’s like’.’
That was close to Chinese New Year and the restaurants were packed.
Madam Loke said: ‘It was a big risk to take him out, but we wanted to fulfil his wish. So we took him – and a 5kg cylinder of oxygen – to a Chinese restaurant near Liang Court.’
About a month after his rare treat, Khai Aik was hospitalised.
A week before he slipped into unconsciousness, he rang up everyone close to him from his hospital bed, asking them to visit him.
Madam See said: ‘He called his nanny’s husband, daughter and son, who dote on him very much, and his aunts too.
‘He seemed to know that he would be going soon. He had fought bravely till the end, never complaining.’
Recalling some of her son’s last words, Madam See said: ‘I would sleep in the hospital with him every night and he would tell me, ‘Mummy don’t sleep, you must accompany me. You must sayang (love in Malay) me’.’
But overcome by tiredness, she would drift off after he fell asleep.
When she awoke on the morning of 11 May, Khai Aik had slipped away.
Copyright © 2005 Singapore Press Holdings Ltd.