Parent of child with rare disorder: 'You must believe to have courage to try'
Today is Rare Disease Day. FOO JIE YING (fjieying@sph.com.sg) speaks to mothers who have come to terms with their children's rare conditions
When Madam Sally Kwek's daughter was diagnosed with having special needs, her family thought she was crazy to push her daughter to learn skills such as reading, writing and going to the toilet on her own.
But the 39-year-old mother of one thought otherwise.
She believed that eight-year-old Jarene, who had been diagnosed with Moebius Syndrome, was capable of achieving things just like other children.
Moebius Syndrome is a rare neurological disorder characterised by weakness or paralysis of multiple cranial nerves. In the US, it is estimated that this disorder affects one in 50,000 live births. There is no data on its prevalence here.
Madam Kwek, who started a self-service laundromat business last year, said: "Parents need to tell themselves, even when the world doesn't believe, that you have to believe.
"You must first believe before you will have the courage to try. If you already give up, that's very sad."
Speaking to The New Paper in a phone interview, Madam Kwek said that as a newborn, Jarene had to fight for her life.
"She kept vomiting and she can't swallow so she choked. She would turn blue," Madam Kwek recalled.
"I was constantly searching for a diagnosis, but I couldn't find any. None of the doctors could confidently say 'This is it'. They treated (my daughter) symptomatically."
Jarene was initially diagnosed with central hypotonia, a condition resulting in low muscle tone that is caused by brain defects.
She failed her first hearing test and doctors were not sure if she could even see, so the prognosis was bleak.
"They didn't know what she could do," said Madam Kwek.
It was only when she was 6½ years old that doctors diagnosed it as Moebius Syndrome.
"My girl's smart, she can read and understand things. But the muscles in her face and throat are affected," said Madam Kwek.
As Jarene cannot swallow, she had to be tube-fed from birth.
"She can't blow the candles off a birthday cake. These are the things we tend to take for granted," said Madam Kwek.
Madam Kwek edits Special Seeds, an e-zine for caregivers of persons with disabilities and special needs.
PROGRESS
Today, Jarene cannot swallow, but she has learnt to swim. She can also speak, although what she says is unclear to most people.
She goes to the Cerebral Palsy Alliance Singapore (CPAS), which offers an academic programme that prepares children for the PSLE.
"When my parents saw my child take a crayon to write her name, it was a mindset change for them," said Madam Kwek.
She hopes Jarene will grow up in an environment with greater access to services for her, whether it is education or common spaces without harassment.
She added: "We shouldn't be put on a pedestal, but we shouldn't be treated like another species too."
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