The girl with something special
By Wong Kim Hoh, ST Senior Writer
Diagnosed from birth with a rare condition called Nager syndrome, she has an underdeveloped face, hands and arms. As a result, she is deaf and relies on sign language to communicate. But her small size belies her resilience and ambition.
Isabelle seen here in November 2013 with her parents Jackie & Nick and Minister K Shanmugam in LASALLE College of the Arts
She has Nager Syndrome, a rare genetic disorder characterised by facial and limb deformities. There are reportedly fewer than 200 documented cases worldwide, and those with it have anomalies including downward slanting eyelids, underdeveloped cheeks or jaws, and the absence of lower eyelashes.
Her father, businessman Nick Lim, 65, recalls: "Isabelle's elbows were also fused, and her thumbs were dangling, hanging by a thread of skin."
The baby's condition came as a shock especially since Mrs Lim, who was 30 when she gave birth, had had a smooth pregnancy.
But there was never a doubt that they would love Isabelle unconditionally.
Mr Lim says: "We read up on books on how to help a child with special needs. One of our first books was given by a friend; it taught us that every child is special and that you should focus on the child rather than her disabilities. We celebrated any progress she made because it would help to develop her self-esteem and confidence."
Standing at just 1.48m and weighing merely 30kg, their special child may be a wisp of a girl today, but her lively eyes and cheerful disposition speak volumes about her zest for life.
She digs Korean dramas, loves romantic novels by Nicholas Sparks - the American author whose works such as The Notebook and The Long Ride have been adapted for the big screen - and takes pretty neat pictures with her smartphone. One, a black-and-white Instagram shot of a Lee Kuan Yew bust, was recently published in The New Paper.
Despite her disabilities, she completed her N levels, has a certificate in accounting from the Institute of Technical Education (ITE), and is now a final-year photography major at the LASALLE College of the Arts.
The credit, she says, goes to her parents. "I'm very blessed and thankful to have such devoted parents who nurtured me into who I am. They always ensure that my self-confidence will not be shaken as I grow," says Miss Lim, who replies to questions in this interview via Whatsapp messages or through her mother, her sign language interpreter.
It has not been an easy journey. For the first eight months of her life, Isabelle's home was the Singapore General Hospital where she was attended to by an array of doctors for her various afflictions.
"All that they could do was to keep her alive; she had one tube for feeding, and one for breathing," says Mr Lim. "We visited her every day, leaving only after midnight. We spent the time bonding with her, hoping to take her home."
Doctors allowed them to take their baby home only after they had learnt to insert the vital breathing and feeding tubes.
Mrs Lim says: "Can you imagine having a foreign tube inserted into the nostrils? Because it was so traumatic, she would always struggle and tear them away and it was heartbreaking to see. My husband and a domestic helper would hold her down, I would slip the tubes in."
And they had to wake up often at night to check that their daughter was still breathing.
To communicate with her, both parents learnt sign language and taught her too.
By the time she was 12, Isabelle had undergone at least three major operations, two to lengthen her jaw and another to remove her dangling thumbs. Through a procedure known as pollicisation, a hand surgeon removed her index fingers and transplanted them to function as thumbs so that she would be able to grip objects.
"She got used to them, and learnt to write as if she was born with eight fingers," says Mr Lim.
There were other struggles. Until she was nine years old, Isabelle was fed via a tube inserted through the abdomen to deliver nutrition directly to the stomach.
Then she needed eating therapy to learn how to eat and chew.
"My first meal was chicken rice from Tiong Bahru Hawker Centre. After that, I got hooked and ate it for days wherever I went," she says, adding that she also loves bulgogi and lasagna. She loves omelette too, but only if it is cooked by her grandmother.
From kindergarten through her primary school years, she had to wear an eye patch. Her left eyeball tended to roll up, exposing just the whites, and to get the weak eye to work better, she had to wear an eye patch on her right eye.
"When she was in school, she would dutifully leave it on; but when she came home, she would bargain with me to take it off. But really, she took all these challenges in her stride. She has a very positive nature and temperament, which made taking care of her easy," Mrs Lim says.
The Lims videotaped the key chapters in Isabelle's life to record her numerous challenges and operations.
A voracious reader, Isabelle completed her primary education at The Singapore School For The Deaf before attending Balestier Hill Secondary School, and the transition to a normal school needed some adjustment.
"I had to integrate with speaking teachers and students who could not understand sign language. There were resource teachers for core subjects like English and Maths, but other than that, I had to rely on myself," she recalls. "I had to go home and follow up by reading my textbooks and making sure I understood the day's lessons."
Although she could have sat the O levels, she decided to pursue a Higher Nitec (National ITE Certification) in accounting, thinking it would help her job prospects.
It was a big mistake. "My first year was like a silent movie. I had no help and I struggled. I only had the help of an interpreter in my second year," she says.
An internship and a brief stint working for a speech therapist also made her realise crunching numbers was not her cup of tea. "It was so boring. I was staring at the computer the whole day," she signs, shaking her head.
She decided to study photography instead.
Her interest had been piqued in Primary 5, when one of her teachers allowed her to play with his camera. She started fiddling with her mother's mobile phone and a point-and-shoot digital camera before an uncle gave her a Nikon D90 two years ago.
At LaSalle, she became the first recipient of the Dare To Dream scholarship set up for deserving students with special needs.
In her application for the scholarship, she wrote about how she had become a more observant and intuitive photographer: "I can sense people's laughter, joy and cheerlessness as I look into the lens and capture them."
At LaSalle, she has an interpreter and a note taker - from the Singapore Association of The Deaf's Itinerant Support Service - to help her cope with her studies. She is doing well, and has had several of her pictures featured in exhibitions.
"My dream is to get a lot more exposure shooting people, objects and events so that when I'm ready to set up my studio, I would have learnt everything," she says.
DISCOVER HER ACHIEVEMENTS HER CONDITION
Shooting for her dream
With such a fiery passion for photography, it is no wonder Isabelle’s collection of artistic shots have been captured so stunningly in this gallery.
For more of Isabelle’s photographs, you can check out the following sites.@hello.issyshoots / @issyshootsinbw
Nager syndrome is a rare condition worldwide and mainly affects development of the face, hands and arms. The severity varies among people with the condition. The syndrome does not affect a person’s intelligence, hence, people with the condition can proceed to achieve academic success and live normal lives.Symptoms
Some of the characteristics of the condition are:
- Underdevelopment of the cheek and jaw areas.
- Possible cleft palate (opening in the roof of the mouth).
The above abnormalities frequently cause feeding problems in infants. Often, a gastronomy tube is surgically implanted into the stomach for proper nutrition. The airway is also usually restricted leading to life-threatening breathing problems. Hence, a tracheotomy is surgically inserted to facilitate a safe airway for breathing.
- Lack of development of the internal and external ear resulting in hearing loss.
- Small or unusually formed ears.
- Down sloping of the opening of the eyes and absence of eye lashes.
- Underdevelopment or absence of the thumb.
- Fingers are unusually curved or fused together.
- Shortened forearms and poor movement in the elbow with difficulty in extension.
- Bone abnormalities in the legs and feet.
The cause of Nager is unknown. Although most cases occur in people where there is no family history, there have also been cases where the condition runs in families.Treatment
Treatment depends on the symptoms and challenges present. Typically, plastic and/or facial surgery is required to manage breathing and feeding problems. Hearing impairment can be assisted through hearing aids. Early intervention with physical, speech and occupational therapies can help to maximize the person’s capabilities.Useful links: