Ms Sofhie Airinie, 19, has a twisted spine and a muscle-wasting disease that makes breathing and moving a struggle.
But the pain of living with scoliosis and congenital myopathy – an incurable disease of the muscle tissue – is forgotten when she starts to paint.
She said sketching and painting help her deal with life’s difficulties.
One of her pieces, now on display at the Singapore Art Museum, is a collage of an owl and represents how she tries to focus on the positive in life.
Like her, several other patients have contributed artworks to help tell the stories of patients in Dreamcatchers, an adolescent chronic illness peer support group under the National University Hospital (NUH).
This year’s exhibition theme of Into The Looking Glass explores the triumphs and tribulations of young people who live courageously with chronic illnesses.
Ms Sofhie started painting at age six and has made about 50 artworks, from sketches of birds to movie characters.
“Art distracts me from the adverse… Instead of what’s distressing, I tend to think about art and what I want to create to feel better,” she said.
Ms Bernadette Png, assistant manager at the Department of Paediatrics at NUH, said the aim of the exhibition is to raise awareness that childhood chronic illnesses are not disabling.
Dr Mahesh Babu Ramamurthy, head and senior consultant at NUH’s Division of Paediatric Pulmonary and Sleep, said there is currently no cure for children with congenital myopathy although significant improvements have been made in supportive care over the years.
For instance, the availability of home ventilation and non-invasive ventilation has improved the quality of life for both patient and caregiver.
“The prognosis for these children has improved significantly in the last 15 years because of the supportive care.
There is, however, a gradual decrease in the amount of activity that these children can be involved in, and over time become wheelchair dependent,” he added.
Ms Sofhie’s mother Sofia Aziz, 48, said her daughter – the third of four children – hopes to one day sell her artworks so that funds can be used to help those who are sick.
Said Madam Sofia, who runs a mining company with her husband: “My family and I have to be strong and stay positive… even though sometimes I break down and cry behind her.
kcarolyn@sph.com.sg
This article was first published on December 18, 2016.
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