Avin Foo, Age 15
Avin has suffered from epileptic fits since he was born. As he grew up, performing simple tasks such as tying his shoelaces and buttoning his shirt proved difficult. Abandoned by her husband, his mother, Mdm Lee, took it upon herself to teach him everything she could - and she did so tenderly. She bought him bubbles and candles to practice blowing. She patiently and painstakingly showed him how to move his fingers to improve his motor skills. Before long, Avin, the youngest of her three children, was living the happy, fairly normal life of an able-bodied boy, able to talk and eat on his own with only a mild intellectual disability.
Then tragedy struck. In 2015, when he was 12, a severe epileptic attack came at the worst of times – a public holiday. By the time the ambulance finally arrived, seizures had set in that lasted the entire journey to NUH. He was unconscious by the time paramedics wheeled him into the emergency room. Although Avin spent 107 days in hospital, including two weeks in intensive care, Mdm Lee rarely left the waiting room. Exhausted and stressed, she stood by as her little boy endured the pain of operation after operation, dialysis, blood tests, and being tethered constantly to a drip.
“It was very hard to sleep,” she recalls in Mandarin. “By 8pm, the nurses will turn off the lights whether you want to rest or not and the next day turn it on again at 6am whether you are still asleep or not.”
Since his release from NUH three years ago, Avin has been paralysed from the neck down, bed-ridden, and able to move only his head, eyes and mouth. He can no longer write, speak or move. Mdm Lee is not sure if he even understands his condition or recognises his home. Her estranged husband works in Malaysia and returns only once a week to provide money for her, Avin and their two daughters but nothing more.
So, Mdm Lee has committed herself to caring for her son 24 hours a day. She administers more than 10 different medicines and vitamins. She inserts a tube into his stomach through his nose five times a day to feed him two types of milk. Every four hours, she checks on him, change his pampers, massages him and turns him over to prevent bed sores. While she is devastated by her little boy’s condition – his intellectual disability and epilepsy now further complicated by Spastic Quadriplegia – she does whatever she can for him. “If other helpers can do it,” she says. “I can do it too.”
Avin has also developed Type 1 diabetes, so Mdm Lee gives him daily Insulin Injections too. “I used to be very afraid of needles,” she says. “But now it’s a small thing that I wouldn’t fear anymore.” She was taught all these skills by the nurses and doctors that she became acquainted with during the long months at NUH. Regulating Avin’s intake of food and water, monitoring his insulin levels and administering his many medications is a struggle and Mdm Lee knows it must also be uncomfortable, possibly even painful, for her son. But she keeps in mind that it is necessary for his well-being – and that’s what motivates her to never falter.
“There are other children out there worst off than Avin,” she says.
“I just hope Avin will stay healthy, peaceful and not be in pain,” she says. “I know that Avin may leave me anytime so each morning when I wake up and see his eyes open, I thank God.”
She also says that as Avin cannot communicate with her, she relies on her Mother’s intuition to figure out what’s wrong with her son or what’s making him uncomfortable and tried to adjust for it accordingly.
When communicating with her son, she will say: “Come on, it’s time to wake up. Mom will cook for you. Don’t you want to play computer games?”
Despite Avin’s disabilities, Mdm Lee still sends her son to school at Rainbow Center on Margaret Drive. She wakes up at 5am to prepare his medications and food before going downstairs where the school bus picks them up at 6.30 am together with 4 other wheelchair-bound children. Mdm Lee stays with him at school until 12.30pm before they head home together.
As a result of the constant attention her son needs, she never gets a good night's rest. She is only able to sleep two to four hours a day. She puts on a courageous front and is grateful for the chance to be with her son and do all she can for him but at the end of the day, she is emotionally, physically and mentally drained.
“I cannot give up. Who will look after my son if I do?” she says.
Club Rainbow Singapore (CRS), thus, has been there to help Mdm Lee. It provides monthly supportive counselling to help her manage the stress of caring for Avin, something for which she is most grateful. “If I am not happy and not healthy, how am I to look after my son?” she says.
Her family receives monthly food rations and diapers from the centre and was also recently awarded with a refrigerator donation. Moreover, CRS has also provided transport support for Avin to fetch him to and from hospital for his monthly medical appointments at NUH.
Although it barely begins to relieve the strain of caring for Avin, all this support does go a long way to ease her financial and emotional burden and remind Mdm Lee that she isn’t alone.
Her philosophy? “Live in the moment and take one day at a time. Don’t live in the past. You wouldn’t be happy.”
“As long as I breathe and Avin breathes I will love and care for him.”
Keen to help other children and youths like Hazirah? Click here to donate to Ride for Rainbows 2019, our annual night cycling event that aims to raise funds for children who have chronic illnesses and their families.
Written by Charlotte Leong
Edited by: Paul Zach
Photo credits: Josh Wijaya