Brave little fighters

PHOTO: Brave little fighters

She hates bad weather because she's afraid the wind will be too strong for her son.

Madam Cheang Yuet Ling, 49, a cleaner, said her son, Emmanuel Tham, had been nearly blown off the ground.

That's because Emmanuel, who is a Primary 6 pupil at Da Qiao Primary, has the size and build of a Primary 1 pupil.

He suffers from Neurofibromatosis Type 1, a rare genetic disorder which is characterised by skin pigmentation and the growth of tumours along nerves in the skin, brain and other body parts.

People with this disorder have an increased risk of developing cancers such as brain tumours and leukaemia.

He inherited this condition from his mother who has to wear a leg brace because the disease also affects the bones.

Emmanuel was diagnosed with the disorder when he was six, and it has affected his development.

He's just 20kg and 1.2m tall. The average boy his age usually weighs around 40kg and is 1.5m tall.

Relating the incident where he was almost blown away by a strong wind, he said with a laugh: "When I realised I could no longer walk forward, I hugged the metal railings of a nearby overhead bridge."

Madam Cheang says she takes him to school each time there's bad weather as a result of such fears. The school is a 15-minute walk from their home in Ang Mo Kio.

No laughing matter

But many other incidents in Emmanuel's life can not just be laughed off - he fractured his shin when he was just six years old as he too has weak bones. He could not attend PE lessons for two years after that.

Although he takes PE now, doctors have advised him against doing sports, as a shove could land him with other broken bones.

These days, he goes to the doctor once every two months.

Said Madam Cheang, a divorcee with two other children - healthy daughters aged 14 and 16: "He's small, but he's fierce. He's a chilli padi. He knows how to protect himself."

In school, Emmanuel is often teased by his peers for his small size. But he never lets them get away with it.

He said: "When they ask me why I'm so small, I tell them, 'Don't be so nosy.'"

Although small-sized, Emmanuel has a big heart.

He knew his mother needed to buy a leg brace for her left leg, but it cost more than $1,000 and she could hardly afford it with her monthly pay of less than $1,000.

Said Emmanuel: "I knew I needed to save money for Mummy."

So he scrimped on his recess money and saved about $100 in three months.

Madam Cheang's church friends contributed the rest of the money to buy her a leg brace two months ago.

Looking at Emmanuel lovingly, she said quietly: "I thank God that he's a good, obedient boy. For now, Emmanuel's just happy relaxing after having just finished his PSLE."

Zest for life

Zest for life helps him cope with blood disorder

He grabbed his belly and poked a needle in swiftly.

Then he stuck a clingwrap-like sticker over the needle so that it would not shift around. "Done," he said.

This injection process was carried out not by a doctor but by a child.

Muhd Luqman Hakim, 11, has been inserting needles into himself since he was just six years old.

"It's not painful or scary. I've poked myself so many times already," said the Primary 5 pupil at Sembawang Primary School cheerfully, while lifting up his shirt to show his many marks.

Not enough oxygen

Luqman suffers from thalassaemia major, a blood disorder in which his red blood cells are unable to carry enough oxygen around his body.

So he misses school once a month to go for blood transfusions.

But these cause iron to build up in the long-term, and excess iron in the body destroys organs.

So for five nights each week, he takes Desferral injections to remove excess iron from his system. He doesn't do it alone. His older sister, 13, also has thalassaemia major.

They inherited the disorder from their parents, who both have thalassaemia minor.

The New Paper visited the siblings on Wednesday night at the family's three-room flat in Woodlands. Said Luqman's father, Mr Kamsani Ali, 39, who is unemployed: "I thank God for giving Luqman the guts to do this himself."

Even so, he fears for his son's life as he says the disorder can shorten one's lifespan by up to 20 years.

[Above: Muhd Luqman Hakim says giving himself injections is not as painful as it looks. In the background, his older sister is preparing her jab.]

Doctors have also discouraged Luqman from strenuous sports, in case he faints. But Luqman is "very adventurous", said Mr Kamsani.

He cycles, loves kite-flying and running. He also proudly showed us medals that he won during his school's annual sports days.

This love for life allows him to bravely bear other difficulties that result from his disorder.

Sometimes, the blood transfusions leave him with allergies, such as swollen lips and bloated hands.

"Once, my head swelled up too. But it's okay, it goes away after a while," he said.

One thing that makes him upset, however, is when he misses school to go for blood transfusions.

"I have to catch up on my homework, and I can't see my friends," he said solemnly.

Luqman is doing well academically and has big dreams for his future.

"I'm third in class this year, and I want to go to ACS(Independent) next time to play rugby.

"When I grow up, I want to be a pilot so I can go overseas," he said with a grin.

This article was first published in The New Paper.