Girl with rare skin condition and no hands among 30 winners of Awwa’s community integration awards

SINGAPORE – Zoe Ng was only a week old when her rapidly growing skin constricted blood flow to the tissue in her hands, causing the tissue to turn necrotic.

Despite losing her hands and living with the rare skin condition harlequin ichthyosis, which causes thick and scaly skin growth, the nine-year-old girl remains positive about her studies at Nan Chiau Primary School and her passion for art.

She makes it a point to complete her homework every day, even though she is easily tired as a result of her condition – significant energy is required to constantly produce new skin cells.

After taking a nap, she stays up until around 9pm for her studies, using her stumps to hold a pen or pencil.

For her resilience, Zoe received the Perseverance Award on Nov 8 from President Tharman Shanmugaratnam at the biennial Awwa Community Integration Service Awards, which celebrate the achievements of young people with special needs and the people who support them.

She was among 30 people who were honoured at the event.

Awwa, a social services agency that operates a therapy hub, started its Community Integration Service programme in 1991 to help young people with physical disabilities be included in mainstream schools and the community.

Zoe likes going to school and has help from an occupational therapist from Awwa to integrate into the classroom setting.

She does not let her condition stop her from pursuing things she enjoys, such as playing football with her two older siblings, a 15-year-old sister and a 13-year-old brother.

Zoe’s father, secondary school teacher Samuel Ng, constantly reminds her to stay optimistic and to treat hurtful comments or unwanted stares as actions that come from a place of ignorance and pure curiosity.

Mr Ng, 46 – a single parent who looks after his three children with the help of his mother – was also honoured at the Awwa ceremony, receiving the Outstanding Caregiver Award.

He said his elderly mother also deserves credit for taking care of Zoe wholeheartedly whenever he is at work.

The two adults have to pay close attention to Zoe’s needs, including administering eye drops and applying oil to her skin throughout the day. Zoe also has to have a long bath routine of up to three or four hours every day to thoroughly exfoliate and moisturise her skin, as her condition means she is prone to having constant skin cracking and infections.

Mr Ng said there is a limit to how much he can do, as there will come a time when Zoe, who is shy, will have to figure things out on her own when he is not around.

“Most importantly, I need to build her sense of self-worth and confidence, so she knows what her value is. Even if I’m not present, she can anchor herself on her sense of who she is,” he said.

Zoe’s family won the Outstanding Family Award for giving her many opportunities to learn and play, as well as helping her foster social connections.

Speaking at the award ceremony, Mr Eric Chua, Senior Parliamentary Secretary for Social and Family Development, said: “Inclusiveness is everybody’s business. It takes a collective effort – educators who adapt their teaching, employers who create inclusive and accessible workplaces, and neighbours who offer empathy as well as understanding.”

In this spirit, Mr Durkeswaran Krishnan, 19, aims to advocate true inclusivity for people with disabilities by demolishing the misconception that these people are incapable or helpless.

Mr Durkeswaran, who was diagnosed with cerebral palsy when he was six months old, said: “Ever since I was young, I have always wanted to play sports. During physical education classes, I would always just sit in one corner to watch others.

“So when I got the opportunity to try boccia, I was really interested.”

Boccia requires players to bowl balls as close as possible to a white target ball.

The Secondary 5 student at Jurongville Secondary School won the Advocate of the Year award for championing greater access to inclusive sports.  

Beyond sports, Mr Durkeswaran is also interested in stepping up to be a voice for people with disabilities, and would like to pursue law in order to do this well.

Mr Chua said that more children today have invisible needs, while case loads are rising and needs are becoming more complex than before.

Awwa noted that it has seen a shift in the profiles of young people in its Community Integration Service programme over the past three decades, from those with physical disabilities – such as cerebral palsy, muscular dystrophy and spinal muscular atrophy – to those with less physical but increasingly complex needs such as developmental coordination disorder, speech sound disorders, and invisible conditions such as sensory and learning difficulties.