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She ignores her aches to take away his pain

Submitted by Denis Edward on May 13, 2011 - 4:54pm

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 "All I wish for is that I can continue looking after Edwin. He is my only hope.. If he leaves me, I don't know what I am going to do."

  Madam Lily Ng changed Mr Chew into a fresh set of clothes after wiping him down.

AT 5PM every day, Madam Lily Ng, 52, waddles into her son’s room with a small pail of water. She soaks a hand towel in it and wrings it dry beside his bed.

“Edwin, I’m here, I’m here,” she calls out softly to her sleeping son, Mr Edwin Chew, 26.

Painfully resting her weight on her left leg, Madam Ng removes her son’s clothes and begins to wipe him down. Every action – from meticulously wiping his fingers to turning his limp body over to wipe his back – is gentle.

It is a heartwarming sight, but also poignant because mother and son are suffering from the ravages of disease.

Madam Ng has severe scoliosis, a condition where the spine curves and becomes progressively worse.

Her shoulders are lopsided and her right hip juts out awkwardly at an angle when she walks.

Mr Chew, who is her only child, has muscular dystrophy, a condition in which his muscles waste away withtime. He was diagnosed with the disease when he was five.

Taking care of her son is a back-breaking job for Madam Ng, who has had scoliosis since she was 18.

She said in Mandarin: “Don’t think he is light just because he is so thin. He is actually very heavy. At the end of the day, my body is always sore and tired.”

Madam Ng cannot walk far because of her pronounced limp. Even going to the nearby wet market to buy food is a daunting task.

Daily routines such as wiping him down and sliding the bed pan underneath his hips leave her with excruciating aches in her back and legs.

She is also developing signs of muscular dystrophy; it is more and more difficult to lift objects with her left arm.

Mr Chew gets a bath only once a week when his father, Mr Chew Seow Pin, 53, has time to carry him to the bathroom.

The family live in a HDB flat in Woodlands.

His father, who earns $1,500 a month as a security guard, carries and places him in a commode chair in the bathroom.

If her son needs to pass motion, Madam Ng wipes him clean before bathing him.

His father waits outside till he is ready to be carried back to his bed.

The whole process takes more than an hour.

Madam Ng said: “When Edwin was still able to walk a little, I could half carry him to the bathroom daily. In the last three to four years, he has become completely unable to walk and has got heavier.

“What to do? I’m just afraid that as my own condition gets worse, I won’t even be able to wipe him down any more.”

The family discovered Mr Chew was suffering from muscular dystrophy when he was five years old.

Madam Ng said: “When Edwin first started walking, he was just like any other child. But we soon noticed that something was wrong.

“He used only his right leg to walk up the stairs. He even crawled up sometimes. My husband got angry as he thought that Edwin was imitating the way I walked.”

Madam Ng took him to Tan Tock Seng Hospital and tests revealed that he was suffering from muscular dystrophy.

She said with a grimace: “I thought the doctors were talking rubbish. I told them that they were wrong. I just wanted my son to be normal.

“I tried to find a cure for him. I took him for reflexology and acupuncture sessions, but nothing seemed to work. It was devastating.”

Madam Ng quit her job as a factory production line worker to look after her son.

Since then, she has not stopped tending to his every need, from helping him to unwrap a sweet to brushing his teeth.

A soft-spoken Mr Chew said haltingly: “When I was in primary school, my mum helped me prepare for my English spelling tests.

Spelling list

“She had to find out the correct pronunciation for words in the spelling list so that she could ask me to spell them. I scored well when it came to spelling.

“As my dad is at work most of the time, my mum is the one who takes care of my daily needs.”

Mr Chew stopped school in 2006 after graduating from the Institute of Technical Education.

Madam Ng said: “He wanted to continue studying but as he grew older, he couldn’t even flip the pages of his textbook. It was too difficult.

“Now, he just stays at home all the time.”

According to Madam Ng, they hardly step out of the house as “it is expensive and difficult to take Edwin out to shopping centres”.

She said: “We have to call a London Cab so that Edwin’s wheelchair can fit inside. The cab fare there and back will cost about $70. We can’t spend that kind of money all the time.”

The last time they went out was a few months ago to nex shopping mall in Serangoon.

Madam Ng said: “Edwin loves to go out to look at things. If possible, I try to take him out. If he wants to eat cakes, chocolates or ice cream, I will buy them for him.

 

 Madam Lily Ng turning Mr Chew over to wipe his back.

“He likes to eat at Jack’s Place. I will just order food for him as the things there are really expensive. I’m fine with not eating as long as Edwin enjoys the meal.”

Her son said: “It really disturbs me when people ask me why I am so thin. It is as if my mum doesn’t want to feed me or buy me my favourite foods.

“I need people to understand that my muscles will not grow back no matter how much I eat.”

When asked if he has any dreams, Mr Chew whispered poignantly: “I want to be able to walk and run like a normal person, that’s all.”

A North West Community Development Council (CDC) spokesman said it has helped the family appeal to the Lee Foundation for assistance.

They received $150 a month from April to September 2009 and from January to December last year.

This year, the CDC has appealed to the Lee Foundation for an extension of assistance.

The family will be getting $150 a month for a year, starting this month.

In 2009, when his father was unemployed, the CDC gave the family a cash allowance of $300 a month from March to May.

Madam Ng said: “Our main concern now is getting milk powder for Edwin. He drinks milk three times a day. It’s really a lot of milk.”

Mr Chew takes milk for nutrients as it is difficult for him to swallow. The milk powder costs about $15 for a 400g tin and he needs up to six tins a month.

Unconditional love

When asked if there was anything he wished to say to his mother, Mr Chew said: “I would like to thank my mum for everything she has done for me and her unconditional love.

“I know that it hasn’t been easy at all.”

Madam Ng said: “All I wish for is that I can continue looking after Edwin. He is my only hope. If he leaves me, I don’t know what I am going to do.”

With a wan smile on her face, she turned to her son and said: “Do you want to take a nap now? I think the reporter is nearly done with the interview.”

Running her fingers through his hair, she picked up a blue bolster and wrapped his gaunt limbs around it.

“Are you comfortable? Are you okay?” she asked at least five times.

“Yes, yes, I am,” he murmured in reply.

UPDATE: Readers respond, offer donations

 

Edwin's memoir of his primary school days

Below is an excerpt of what Mr Edwin Chew, now 26, remembers from his primary school days. He hopes to publish a book about his life.

WHEN I had a chance to attend Henderson Primary School, my parents were both excited and anxious.

They got all the necessary books, stationery, school uniform and shoes ready way beforehand.

They made sure I knew my alphabets and that I could count from one to 100.

They took me to a furniture shop and bought me a study table with a cabinet and drawer.

They even set aside a corner for the study table in the living room.

I knew they were worried about how I was going to cope on my own at school.

On the first day of school, I woke up to find that the sky was still pitch black.

I asked my parents: “Is it morning already? Where is the sun? Isn’t morning supposed to be bright and sunny?”

My parents smiled and laughed.

My mum made me breakfast.

I had bread, an egg sunny-side up and milk.

When I reached school, it was time for morning assembly.

All the students had to stand up for the flag-raising ceremony.

I had difficulty getting up.

It was a struggle and it took time for me to finally rise.

I still remember that I was asked to participate in Games Day. It was a game called “bean bag scramble”.

The class was divided into two teams and told to stand on opposite ends. At each end there was a bin.

An odd number of bean bags were placed in the centre (spread out to avoid collisions).

We had to run to the centre, grab a bean bag and run back to put it in our team’s bin.

We repeated this over and over.

The team with the most bean bags would win the game.

The way I ran made the other children mock me.

Their parents were there too and everyone’s reaction made me feel really uncomfortable.

I think my mum felt the same, since she was there too.

As I grew up, my muscles got weaker.

I am grateful to my parents for their unconditional love towards me despite the increasing severity of my condition.

They put in their best efforts to give me a complete family in whatever way they can.

It never crossed their minds to leave me at a welfare home.

My mum was told that I may not live beyond 25 and may be bedridden by 21.

As the years go by, there are more and more uncertainties in mylife.

The fight carries on, it still hasn’t ended.

How long is this going to last?

No one knows for sure.

This story was published in The New Paper on Thursday (May 12)

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