Toh Wee Yang, Age 18
When Wee Yang was in kindergarten, his parents noticed that he seemed to fall down quite often, but they did not think anything of it as it is part of the growing up process in young children. However, when he entered primary school, the school nurse noticed that he had trouble squatting as well as climbing the stairs and so advised his parents to send him to the hospital for a full-body check-up. What the Toh family did not expect, was the doctor’s eventual diagnosis.
At the age of 7, Wee Yang was diagnosed with muscular dystrophy, a disease that causes progressive weakness and loss of muscle mass. While symptoms vary, some people with muscular dystrophy lose their ability to walk, and may have difficulty breathing or swallowing. Wee Yang was diagnosed with the most severe form of the illness, where deterioration was most rapid. Wee Yang had difficulty standing and walking by the time he turned 8. By the time he was 9 years old, he was wheelchair-bound.
Wee Yang’s mother, Madam Ong, describes the family’s reaction. “We did not know what muscular dystrophy was. We had difficulty accepting the diagnosis; we had never heard of this illness. We did not know how to deal with it.”
Getting emotional, she states, “When I think about it, the tears just flow. Even after all these years, it is difficult to talk about it.”
Over the next few years, Wee Yang’s condition worsened and he encountered other medical challenges associated with muscular dystrophy. The doctor advised Wee Yang’s family to let him undergo corrective spinal surgery for the curvature of his spine, which was compressing his lungs and causing repeated lung infections.
Wee Yang’s mother describes the days leading up to the operation, “Wee Yang cried the night before the operation because he was scared, but when I asked him about it, he told me his eyes were wet because he had washed them. He did not want me to worry. Wee Yang is a very thoughtful and considerate boy.”
These qualities, along with his positivity, are evident in conversation with Wee Yang. When asked what gives him inspiration or motivation in life despite the challenges faced, Wee Yang responds, “I live each day as it comes. I do not really have a plan. I just try to be happy. I do not think so much. I laugh more.’’
This positive mind set has been necessary to face many of the day-to-day obstacles that Wee Yang and his family must face. Despite the surgery, scoliosis set in about a year after the operation and Wee Yang lost the ability to take care of his own needs.
Madam Ong reveals, “Wee Yang is now completely reliant on me. I have to feed him at every meal before I can eat. As Wee Yang cannot turn by himself in his sleep, I have to wake up and turn him multiple times every night. He cannot stay in a fixed position for long periods as his limbs will go numb. I have not slept through the night for a long, long time.”
Wee Yang requires assistance to perform daily activities, and he has suffered from breathing difficulties due to repeated lung infections. To add to this, his parents are also facing their own medical conditions. Madam Ong suffers from nerve and joint disorders from years of moving and carrying Wee Yang.
Club Rainbow has helped to take some of the burden off the family in caring for Wee Yang. Wee Yang and his family first learned about Club Rainbow through an NUS social worker who happened to be an ex-beneficiary of Club Rainbow.
In a voice laced with gratitude, Madam Ong says “Club Rainbow has helped us a lot. They have provided both financial and transportation support to us. Wee Yang gets home-based physiotherapy once every 2 weeks and we get food rations, including milk and diapers as well. We have also gone for a number of programmes to watch the fireworks and even to have dinner at Orchard Hotel. Wee Yang has also won several educational bursary awards given out by Club Rainbow”
Wee Yang adds, “Club Rainbow organises fun activities. I really enjoy attending the programmes. The most memorable event I attended was a trip to the Trick Eye Museum. We took many interesting photos. Another memorable event was when we attended the family retreat on a cruise. It was the first time our whole family was able to travel overseas together.”
Additionally, Club Rainbow has connected Wee Yang and his parents with a network of other families. Madam Ong explains, “We support and ask after one another. Sometimes the other families will call to check on us.”
When asked about his plans for the future, Wee Yang who has just completed his O-levels divulges, “I plan to study Multimedia and Info-communication technology in Nanyang Polytechnic (NYP). I like computer-related stuff. There will be challenges, given NYP is located further away from my home and lessons will be conducted lecture style, but I am looking forward to starting school.”
Being able to achieve these goals while facing the enormous physical challenges brought on by muscular dystrophy, is testament to the strength and resilience of Wee Yang as well as the support he has gotten from his family. When asked if there is anything he would like to say to his parents for all they have done for him, Wee Yang turns coy and reticent, like any normal teenager his age, stating only, “Thank you for everything.’’
Wee Yang continues “All the best to Club Rainbow on your 25th anniversary! Continue to help more people like me.”
Wee Yang’s mother echoes this sentiment, stating, “We hope that Club Rainbow can continue to help more children with chronic illnesses.”