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Woman battles rare skin disease, only to be hit with cancer

MarrickG

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Fate can sometimes be cruel, conceded this 41-year-old Malaysian mother of three young daughters.

Yet, in a telephone interview from her Sungai Buloh home in Selangor, Malaysia, Madam Hee Fui Ching told The New Paper on Sunday: "I leave my life in the hands of fate.

"Each day that I wake up and go to sleep alive is a gift from God. I go when He decides it's time for me to go."

Not that there is anything that the housewife can do about it.

First, she was born with a rare skin condition that left her feeling insecure and self-conscious.

Now, she has "officially" been handed her "death sentence": Doctors have told her she has only 10 months to live following her latest radiological report on Oct 29.

Madam Hee had been diagnosed with advanced nasopharyngeal cancer (nose cancer) with lung, liver and bone metastatic cancer two years ago.

She said: "You know, after more than 50 sessions of chemotherapy and radiotherapy, what's left now is just a miracle.

"Plus my fighting spirit."

It is the same stoicism and strength that pulled her through the misery of being born with a "dalmatian-spotted face and a wild boar-skin-like body".

There are also strands of hair growing from some of the black patches on her body.

"I'd be lying if I told you I wasn't upset by the ugliness. But I accepted it as my destiny."

One in 20,000

Superstitious members of her family believe that the condition was the result of her pregnant mother looking at the wild boar prize which Madam Hee's uncle had hunted and killed.

"It was a black boar, and its blood had splattered over its face," she said.

But Dr Goh Boon Kee, a consultant dermatologist at the National Skin Centre, told The New Paper on Sunday that Madam Hee has a rare condition called bathing trunk nevus (giant congenital melanocytic nevus).

He said: "Moles are collections of pigment cells in the human skin. (Madam Hee's) condition, which is genetically controlled, consists of large (often hairy) moles, present at birth, that cover a large part of the body, associated with smaller ones scattered onthe face and limbs ("satellite" moles).

"The moles are benign."

No figures are available for similar cases in Singapore, but Dr Goh added that it's an uncommon condition, with the reported incidence of being less than one in 20,000 births.

A check on the Internet also turned up few reported cases, although there are a couple of websites set up by support groups, one of which is in Hong Kong.

Madam Hee said that the rarity of the condition is likely why her parents did not persist in seeking medical attention for her.

"I even tried to go for various forms of beauty treatment. But the spots would grow again," she disclosed.

"In the end, we all gave up."

Going to school would have been an ordeal for Madam Hee too, had it not been for her older cousin, who was also a schoolmate.

She said: "I dare not imagine how torturous it would have been, trying to live with being ostracised and taunted.

"No one wanted to sit next to me in class, much less play with me."

There were also times when children would throw stones at her, calling her a dirty wild boar.

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"I live each day as it comes"

Other than depending on her cousin to come to her defence, Madam Hee is also grateful for having a doting dad.

She said: "When I go home in tears after being bullied, my dad would scoop me up and we'd ride off on his scooter to the bully's home.

"He'd reason things out and ask the child to apologise to me."

So, Madam Hee added, while it hurt to look into the mirror each morning, she went to bed at night comforted by love.

When she finally accepted that nothing could be done to "save her face", she decided to save money by doing without make-up.

"What's the point of wasting the hard-earned money?" said Madam Hee,who worked at a sofa-manufacturing factory after completing her secondary school education.

It was there that she met Mr Goh Chin Lye, who is now her husband and pillar of strength.

The couple have yet to break the bad news to their daughters, aged 10, 12 and 14.

Madam Hee said: "Our girls only know that I'm not well and I'm terribly sick. That's why they live with my mum.

"When they're with me, they'd take care of me if I'm not feeling too good. But they don't know the full impact of what it all means."

She remains adamant that she will not make plans for her "shen hou shi" (funeral in Mandarin).

Madam Hee said: "I live each day as it comes by making the best of it, spending it with my husband, my daughters and the people I love.

"When I die, I want to leave them with happy and beautiful memories.

"I don't need a grand funeral. Just having my loved ones send me off is good enough."

This article was first published in The New Paper.
 
Why nice people always suffers like this while nasty people around you just live life happily with very little problem?
 
I am deeply saddened to read of Madam Hee's plight! Imagine the amount of suffering she had to endure! Total respect for her fighting spirit and her family members who stood by her! Hope she prove her doctors wrong and live happily beyond the 10 months "death sentence".
 
"Each day that I wake up and go to sleep alive is a gift from God " .

stupid woman ...if her god is so great ..she would not kena it in the first place ...
 
There are always some unfortunate, pitiful and sad events and things happening to some peoples every days and everywhere around the world. This is a "Fact" of life for human, sad but nothing can be done to the truth fact of life.
To those who encounter unfortunate, sadness and uneventful happening, be strong else for those who are healthy, alive and living treasure what you have every day. As every day when we are able be wake up and conduct our daily life as per normal is a blessing.
 
Why nice people always suffers like this while nasty people around you just live life happily with very little problem?

i was asking the same question everytime i saw LaoCB picture..
 
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