Parent of child with rare disease chooses to stay positive
Today is Rare Disease Day. FOO JIE YING (fjieying@sph.com.sg) speaks to two mothers who have come to terms with their children's rare conditions
While some parents fuss over baby showers or photo shoots for their month-old infant, Madam Jasmine Lee and her husband struggled over whether to have their daughter's throat operated on.
A tracheostomy, where a tube is inserted in the throat to clear saliva and mucus, was important to little Sarah's survival, as she suffers from a rare disease that prevents her from swallowing.
Not treating it could have killed her.
Rare Disease Day is marked worldwide every year on the last day of February. The Rare Disorders Society Singapore celebrates it here as well.
Being told your child has a rare disease is something most parents would be unprepared for and it was no different for Madam Lee.
Speaking to The New Paper on Friday, the 31-year-old housewife said: "When I knew she needed a tracheostomy, I was stunned... Should we do it or not?
"Should we just let her go without even trying to intervene? The consultant had to snap me out (of my daze) and ask if I had heard her."
Madam Lee said that even as Sarah was being wheeled into the operating theatre at KK Women's and Children's Hospital, her husband, a 33-year-old analyst, was still hoping there would be a sign to show that their daughter would not need the surgery.
Sarah was born with a genetic problem that doctors cannot quite put a finger on.
According to a lab report, there is some missing information in one of her genes. But it could not explain the disabilities she was born with.
She turns four in July, but is unable to sit up on her own. She has moderate hearing loss, is short-sighted and has stiff joints.
Being unable to swallow means she requires frequent suctioning to make sure her airways are not blocked.
Whenever there is a mucus or saliva build-up, Madam Lee will insert a tube into Sarah's throat to pump out the secretions with the help of a suction machine.
Last year, Sarah went through another major operation to insert a feeding tube into her stomach.
The slew of unexplained medical problems was initially agonising for her parents and they struggled with the uncertainty.
SELF DOUBT
Madam Lee, who also has a five-year-old son, initially blamed herself for her daughter's condition.
She said: "Was it I who caused her to be in such a state? Was it because I didn't provide her with enough nutrients when she was inside my womb?
"Was it because I did something during my pregnancy that caused her to suffer?"
The former accounts executive quit her job to devote her attention to Sarah.
She admitted that sometimes, she would tear just looking at her daughter. It was a steep learning curve, figuring out how to see to Sarah's medical needs.
It took a year before the couple came to terms with their daughter's condition.
The uncertainty of her condition no longer bothers them and they are mentally prepared for the worst case scenario - Sarah dying before them.
"I won't say if it's for the better or worse if that happens. I'll leave it in God's plans," Madam Lee said quietly as she looked over at Sarah to check on her secretions.
She no longer cries about her daughter, she added.
When she does, they are tears of joy at the little milestones her daughter hits - like the time Sarah was able to hold her neck up for 10 seconds after two years of therapy.
Whenever they go out, they have to take a suction machine with them. This is about the size of a tote bag and it often draws stares from strangers.
But instead of being offended, Madam Lee is now able to laugh about it.
"Just this Chinese New Year, we were at a food centre when this auntie walked past, turned back, then shook her head... I find that amusing," she said.
When they moved into their four-room flat in Bukit Panjang last year, the mother of two posted about Sarah's condition on a residents' group Facebook page after encountering many curious stares from residents.
"We are fortunate that the residents in our estate are actually very gracious and nice people. We always exchange smiles," said Madam Lee.
And she is quick to debunk the myth that special needs parents are very "poor thing".
The family of four went on a family holiday to Bangkok last year.
"Actually, we are not sad people. Parents of special needs kids are the most positive people," she said with a grin.
Just this Chinese New Year, we were at a food centre when this auntie walked past, turned back, then shook her head... I find that amusing.
- Madam Jasmine Lee on having to take a suction machine with them whenever they go out
WHAT IS RARE DISEASE DAY?
Started in 2008, Rare Disease Day falls on the last day of February and is celebrated internationally to raise awareness of rare disorders.
The Rare Disorders Society Singapore celebrated it yesterday with a closed-door event themed "Together in One Voice".
Held at Gillman Barracks, it included the launch of World Through My Eyes, a photo exhibition featuring families from different countries who are battling rare diseases.
The event brought together members of the rare disease community in Singapore, including patients and supporters such as physicians and caregivers.
A condition that affects fewer than one in 3,000 people is considered rare.
There are about 7,000 types of rare diseases and disorders, with more being discovered each day.
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