I vaguely recalled reading an article on her two decades ago and in a twinkling of an eye, she managed to survive the odds to this day... This kudos goes to the parents who showed what love (and sacrifice) and selflessness is really about. :salute: =====================My impossible, beautiful life She has a rare condition that causes her skin to flake off like fish scales, exposing pink skin underneath. -TNP Gan Ling KaiTue, Sep 06, 2011The New Paper It is easy, in today's hyper-paced world, to fast-forward Miss Ng Poh Peng's life from when she was a fragile eight-month-old to the miracle of the 20-year-old today.It would be convenient to sum up, in the blink of an eye, the way she was then, and now.But I would be cheating you if I did. I would be depriving you of a life deemed unlikely, of courage, of unconditional love.Miss Ng's plight once touched readers of The New Paper - perhaps you yourself or others like you - so much that $296,000 was donated to give her a chance at life. When she was a baby, doctors said she would be dead within two months, but she defied their prognosis. Today, Miss Ng should inspire you.In October 1991, we wrote about her battle with congenital ichthyosis, a rare hereditary skin disorder.It causes her skin to flake off like fish scales, exposing pink skin underneath.To this day, there is no cure.But Miss Ng defied the doctors. She lived a month beyond their terminal deadline. Then six months. Then a year.And then 20 years.How? Love, she says.From unwavering, unconditional love, she found the courage and resilience to face life despite the way she looks.Her courage has not gone unnoticed. She was chosen to be one of the 2,400 Singaporeans who carried the Youth Olympic Games torch last year.Despite her skin condition, and the constant pain from arthritis, she persevered in school and, in March this year, obtained a Higher National ITE Certificate in Accounting.She now wants to be a data entry officer.But life continues to be a struggle.She struggles to find work. She applied for two jobs but got no reply.She scours career websites for job opportunities, but a career remains a challenge.\"I need a home-based job,\" Miss Ng said in a mixture of English and Mandarin when I met her family of five in their three-room flat in Chai Chee last month. There is no cure for congenital ichthyosis, a rare hereditary skin disorder that causes the patient's skin to flake off like fish scales. Her father, Mr Ng Swee Siah, 51, is a delivery man.He said in Mandarin: \"Will her boss get upset if she leaves a trail of skin behind her in the office? Because of her skin condition, she cannot be in the sun or in the cold. \"She is also prone to infections.\"Vulnerable to hurt as well: Like any young woman, Miss Ng also once dreamt of romance.\"It was just puppy love in primary school,\" said Miss Ng, smiling sheepishly.\"I cannot remember how that boy looked like (except that) he was taller than me.\"I did not tell him I liked him because he may not be able to accept me.\"Love may have been elusive in school, but it was always there, in abundance, at home.Her parents, Mr Ng and Madam Cheng Fong Mui, 45, adore her. Her brother Kelvin, 16, and sister Qing Wei, 15, fuss over her.As a little girl, Miss Ng had begged her parents to have more children so that she could have siblings... she just wanted to be like many of her friends.She could not comprehend, then, her parents' emotional predicament. They were unwilling to risk having another child with the same condition.After much soul-searching, and with doctors giving the go-ahead, they decided to have a second child.\"Otherwise, who would take care of her when my wife and I are old or gone?\" said Mr Ng.The couple conceived Kelvin and Qing Wei, both with healthy skin.Madam Cheng, a part-time food stall cashier, and Qing Wei are Miss Ng's dedicated caretakers. They apply white soft paraffin on Miss Ng's skin several times a day to keep it moist.Miss Ng, who also has arthritis, cannot stand or walk for long periods.So her father faithfully took her to school daily on his bicycle for the 10 years she was at Opera Estate Primary School and Ping Yi Secondary School.Today, Mr Ng, who suffers from chronic insomnia, still takes her around on the bicycle when the family goes out for meals.He taught her how to fend off rude remarks.\"When she was in primary school, some of her schoolmates called her 'red ghost',\" said Mr Ng. \"Some adults we met outside called her 'a doll'.\"These grown-ups should really use their brains when talking. Why hurt our feelings like that?\"Miss Ng has learned to be positive: \"I just ignore the teasing now.\"Not as easily brushed off is the financial burden they face. Even with heavy medical subsidies from the Government for Miss Ng's treatment, her parents still have to fork out about $200 every month.They survive on a combined monthly income of about $2,000.Miss Ng gets hospitalised once every few months from fever and vomiting.When $296,000 was raised in 1991 to help with her care, the Ngs decided to donate half of the sum to charity. It was a measure of their selflessness.\"There were other people who needed the money more urgently,\" said Mr Ng.\"We were told by a doctor that our daughter would be okay when she reached 10 years old. So we budgeted only for that.\"The rest of the donation lasted till 2004.\"We realised that even with improvement, she will be like this for the rest of her life,\" said Mr Ng.But he still does not regret giving the money away.\"We helped others, so Heaven kept our daughter alive all these years,\" he said.To help pay for Miss Ng's treatment, the family downgraded from a four-room to a three-room flat eight years ago.What else did her parents sacrifice for the sake of her well-being?Ms Ng said: \"Their time, their money...their entire lives.\"In 1991, when we first reported Miss Ng's plight, she was popularly known as Baby Poh Peng.In February that year, she was born by Caesarian section at Kandang Kerbau Hospital.Mr Ng Swee Siah was told that his firstborn had congenital ichthyosis, a rare hereditary skin disorder.He struggled to break the news to his wife, Madam Cheng Fong Mui. The mother did not see her baby until Poh Peng was seven days old.Madam Cheng, now 45, said then: \"She was taken away from me immediately after the delivery. \"My husband told me she was sick.\"I didn't suspect anything then because he had always been frank with me.\"Then came the diagnosis that Poh Peng would not live more than two months.The couple took drastic measures to tilt the odds in their favour. Madam Cheng quit her $600-a-month electronics operator job to take care of Poh Peng.Media reports about the family's plight struck a chord. Readers chipped in and donations reached up to $296,000 then.The donations helped, but what made a real difference in her impossible life was, simply, love.This article was first published in The New Paper. http://health.asiaone.com/print/Health/News/Story/A1Story20110906-297982.html
