Despite the challenges of Amyotrophic Lateral Sclerosis, Carolyn Chan remained optimistic, supported by her parents’ devoted care until her peaceful passing.
At the age of 24, Carolyn Chan began experiencing alarming symptoms—muscle weakness, difficulty swallowing, and speech problems. She lost 15kg in just a year and was soon diagnosed with Amyotrophic Lateral Sclerosis (ALS), a disease that would eventually paralyze her. Despite the grim prognosis, Carolyn, who passed away peacefully on March 16 at 32, spent eight more years with her family, thanks to the tireless, round-the-clock care provided by her parents.
ALS, which often has a life expectancy of just two to five years, left Carolyn’s family heartbroken when they received the diagnosis. At the time, she was working as a social worker in Canada, having graduated from school there. Her mother, Ginette Kwek, flew to Canada to be with her daughter for three months after the diagnosis, and together they consulted with multiple doctors in Singapore. Despite the devastating news, Carolyn remained positive, cooperating with treatment plans without complaint.
As Carolyn’s physical condition worsened, she gradually lost the ability to breathe and eat independently. Not wanting to place her in a hospital, her parents converted their bedroom into a makeshift ICU, complete with medical equipment like a ventilator, oxygen concentrator, and a hospital bed. They also relied on a live-in helper to assist with her care. Carolyn required attention every 15 minutes, yet her mental clarity remained intact, allowing her to continue communicating through electronic devices.
Throughout the years, the family made efforts to keep Carolyn’s spirit alive by taking her on outings when her condition permitted, ensuring she could still enjoy movies or time outdoors. However, these trips required significant preparation, including bringing all necessary medical equipment and carefully lifting Carolyn out of bed.
Though Carolyn lost the ability to speak, she continued to express love and gratitude by using electronic devices, even in the later stages of her illness when her eye muscles deteriorated. During this time, she relied on her eyes to communicate by moving them left and right. Her parents remained strong, despite the immense emotional toll, and focused on providing the best care they could.
As her mother shared, “Seeing our daughter suffer was painful, but we had to be strong and not give up hope.” Though Carolyn could not express her pain verbally, the family learned to understand her needs through her tears, even when they could not fully comfort her.
Through this heart-wrenching journey, Ginette Kwek hopes to raise awareness about ALS, stressing the importance of proper care and support for patients. She shared that ALS patients, though physically limited, can still experience emotional challenges and distress, including guilt or depression, despite their cognitive abilities remaining intact.
“My daughter was always optimistic despite her condition. We were all by her side when she passed and she went peacefully. I believe she is in another wonderful place now,” Ginette said. Carolyn’s story serves as a testament to resilience, love, and the unwavering bond between parents and children, inspiring others to never lose hope in the face of adversity.
