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Doctors predicted she wouldn't live past 12th birthday, but 41-year-old Singaporean has written book, runs online business

Doctors predicted she wouldn't live past 12th birthday, but 41-year-old Singaporean has written book, runs online business
Ms Vivian Goh (left) pictured with her mother, Ms Ivy Yong.
PHOTO: The Straits Times

SINGAPORE - For Ms Vivian Goh, everyday tasks such as eating, moving around or brushing one's teeth are beyond her grasp.

But through her eyes and speech, she connects with the world, runs a business and has also written a book about her story.

The 41-year-old has been bedridden since she was 19 due to a neuromuscular disease, but her medical woes go back to when she was seven months old, when she was unable to sit unassisted.

She was diagnosed with spinal muscular atrophy when she was around 2½ years old.

But Ms Goh has remained cheerful over the years, and currently runs her own e-commerce website and recently even published her book.

Titled Bed-ridden And Unstoppable, the book, out in December last year, details her life since birth.

At 18 months old, Ms Goh suffered a very high fever, the first of many that would see her in and out of hospital constantly.

Her condition worsened to the point where doctors had predicted she would not be able to live past her 12th birthday.

But live she did, even if the early loss of her muscles meant she was never able to walk, she slowly lost her hand functions as her muscles atrophied and she was eventually unable to sit up.

When The Straits Times visited Ms Goh in her flat in Bedok on April 25, she was her usual upbeat and energetic self.

She said: "There is nothing I can do to change my circumstances and being sad about it does not help the situation. So why not choose to be happy?"

Ms Goh is able to speak and uses a laptop to communicate online. She surfs the Net and replies to messages with an eye-driven communication device called Eyegaze. The sensor uses infrared radiation to detect her eye movements across an on-screen keyboard.

She has dedicated her book to her mother, Ms Ivy Yong, 68, who raised her single-handedly and is still her main caretaker.

Her mother, who is not working, is proud of her daughter.

She said: "I have been taking care of Vivian since she was young and she has always been in and out of hospital. To see her publish her own book and also teach me how to use the computer and mobile phone fills my heart with joy.

"Vivian also no longer needs to go in and out of hospital anymore as her condition has stabilised."

Currently, Ms Goh relies on being tube-fed as she does not have the ability to chew. She is fed milk seven times a day.

Ms Vivian Goh uses her laptop with her eyes, having lost the ability to use a computer mouse years prior. ST PHOTO: EUGENE GOH

The debilitating sickness has also led to constant chest infections and unsuccessful physiotherapy treatment made her legs more bent and painful than before.

But nothing stands in her way, including achieving her long-cherished dream of publishing a book.

The result is all the more remarkable, as Ms Goh has never gone to school, and with some help has largely taught herself to read and write in English and Chinese.

Over the years, she has also picked up some computer skills.

She hopes that her story can inspire others to overcome their struggles in life.

The over than 100-page book was written in both English and Chinese.

So far, 800 copies of the book have been sold. She hopes to hit 1,000 by her 42nd birthday in May.

Last year, Ms Goh set up her own website — called Vivian Bao Kah Liao — to sell a wide range of products, including skincare, make-up, toiletries and health supplements.

Bao kah liao means "being able to do everything" in Hokkien.

Her customers usually contact her via Facebook or WhatsApp. When she receives an order, she will contact her suppliers and get them to send the products to the customers directly.

"My biggest challenge is when people buy from me out of pity," Ms Goh said.

"People buy once and that's it, because they only bought an item to help me. I'd rather they didn't do that. Pity money is easy money. But it is neither sustainable nor satisfying."

Visit Ms Goh's website here.

Bed-ridden And Unstoppable, priced at $38, can be bought from her website.

This article was first published in The Straits Times.

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