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The Marathon of Caregiving
27 April 2020

“Wee Yang asked if I had hurt myself and said, ‘If you are in pain, I feel it too’,” Mdm Ong says, recounting a recent fall they had as she was carrying her youngest son to the bathroom in the wee hours of the morning. “My heart broke when I heard a loud thud as the base of his spine hit the ground,” Mdm Ong shares.

Transferring is just one of the myriad of tasks that fill Mdm Ong’s daily schedule. As the main caregiver to HCA Star PALS patient Toh Wee Yang, 20, Mdm Ong tirelessly juggles all household responsibilities. It is a marathon of love she had embarked on when Wee Yang was diagnosed with Duchenne Muscular Dystrophy (DMD) at just seven years old. DMD, a genetic disorder that occurs primarily in males, causes progressive weakness and loss of skeletal and heart muscles. “I was filled with guilt when I learned that the condition is usually passed on from the mother, who is a carrier of the genetic trait,” Mdm Ong says. 

Potholes on the Road

Every mother celebrates the milestones in her child’s life. For Mdm Ong, the passage of time only meant an inevitable deterioration in Wee Yang’s condition, with progressive muscle degeneration and weakness. “Wee Yang has lost so much weight and he has difficulty sleeping because of the constant pressure on his bones,” Mdm Ong shares. A restful night is a luxury Mdm Ong has not enjoyed in a long time. With the deterioration of Wee Yang’s condition, the frequency of turning him in the night has skyrocketed from several times a night to every other minute now. 

Fuelled by Love

There is palpable pride in Mdm Ong’s voice as she speaks about Wee Yang’s maturity and academic achievements. “He has always been a very sensible boy,” Mdm Ong says. “When he was in Primary One, he sustained a bad fall but he willed himself not to cry out loud,” she recalls.

Wee Yang is usually reserved by nature, but he surprised Mdm Ong with a heartfelt message as part of the #ILoveYouMum Challenge social movement: “To me, my mom is the strongest and to her, I'm the strongest and bravest son ever. Even though I haven’t gifted her anything amazing yet, she’s happy just to see me smile and laugh every day.”

While the thought of the future weighs heavily on Mdm Ong, the support the family has received from the HCA Star PALS team has been invaluable. “I call Nurse Serene whenever I need help with managing Wee Yang’s condition,” she says. “The team has given me a lot of reassurance and emotional support.”

It is HCA’s continuing mission to provide support to patients with life-limiting illnesses and caregivers like Mdm Ong. Journey with us to bring comfort to life and add life to days – no matter the duration. To donate, please click here.