Carolyn Chan was a social worker in Canada when she was diagnosed with Amyotrophic Lateral Sclerosis, also known as ALS.
She was 24 at the time and had graduated from high school and university there.
At first, she was constantly ill, then she developed muscle weakness and had difficulty swallowing and talking. She lost 15kg within a year before she and her parents learnt of her diagnosis.
Within a year, she became paralysed, and her parents moved her back home to Singapore
The average life expectancy of a person suffering from ALS ranges from two to five years. But with dedicated round-the-clock care by her parents, who converted a room at home into a makeshift intensive care unit, they got to spend another eight years with their daughter.
The couple bought a ventilator, an oxygen concentrator and even a hospital bed, so that they could be beside her as she slept.
Ms Chan was 32 years old when she died at home on March 16 this year.
Speaking to Shin Min Daily News, Ms Chan’s mother Ginette Kwek, a housewife, said that throughout the ordeal, her daughter remained optimistic and co-operated with all the treatment plans.
“She never once complained,” said Ms Kwek.
While Ms Chan could take care of herself initially, she gradually lost the ability to breathe and eat on her own and became bedridden.
The family has two other daughters at home and also relied on a live-in helper to care for Ms Chan, as she required attention every 15 minutes.
Ever so often, the family would bring her out for a movie or to enjoy the outdoors whenever her physical condition allowed.
But for every trip, they would have to bring along the necessary medical equipment. Ms Chan also had to be lifted out of bed by a hoist.
Ms Kwek, 62, described how even though her daughter could not speak or raise her hand, she could communicate through electronic devices. Through this she could wish them goodnight and say “I love you”.
Later on, when her eye muscles degenerated, there were times Ms Chan could not even open her eyelids. She had to rely on moving her eyeballs left and right to signal her intentions. This continued for a few years.
“Seeing our daughter suffer was painful, but we had to be strong and not give up hope,” Ms Kwek said.
“We would only realise she was uncomfortable when she teared up. It upset us to see that, but if we were to show our sadness she would be upset too, so we had to remain strong and take care of her to the best of our abilities.”
Ms Kwek hopes to raise awareness of the debilitating condition by sharing her daughter’s story.
She said that if expectations are well-managed and adequate assistance is provided, it is possible to prolong the lives of ALS patients.
“The disease has no effect on patients’ cognitive and sensory abilities, so they may experience persistent discomfort from the pain and itch.”
“They can also feel a sense of guilt towards their caregivers or for the financial liabilities their condition brings and be depressed or distressed,” said Ms Kwek.
“My daughter was always optimistic. We were all by her side when she passed and she went peacefully. I believe she is in another wonderful place now.”