“My name is Javen. I am 12 years old and I study at Naval Base Primary School,” said Javen seated in his motorised wheelchair, his voice firm and confident and his eyes twinkling with curiosity and intellect.
Unlike a typical 12-year-old, Javen conversed like an adult. He chose his words carefully, and often surprised Regine, his mother and full-time caregiver with witty comments and maturity beyond his age. Only when the conversation topic moved to his passion of creating clay sculptures (include pictures of him with sculpture), and adventure trips taken with his fellow Club Rainbow members that his eyes lit up.
Javen described his first trip on the Royal Caribbean Cruise as a member of Club Rainbow in 2014, “I like going on the Royal Caribbean Cruise,” he said, “but on the last day, I very unlucky (because) only on the last day, I found the arcade,” Javen continued, “I also like going to National Day Parade in 2018 because they (Club Rainbow) put us in an air-conditioned VIP Box and view is so nice!” Regine broke out into uncontrollable laughter at his candid comments.
When it comes to his favourite foods, Javen has a mind of his own. “I don’t like fish, but my favourite food is broccoli soup with a tinge of pepper – just a little pepper, otherwise my throat will burn,” he chipped, “ And definitely, avocado shakes because it makes me feel full…and braised eggs. But just the egg white and not the yolk.”
Regine explained the reason for Javen’s preference for certain foods is because of the way he eats. Javen is tube-feeding. At 17 months old, Javen was diagnosed with Spinal Muscular Atrophy Type 2 (SMA2), which is a genetic neuromuscular disorder that affects the nerve cells that control the voluntary muscles. Children can sit up without support but they cannot stand or walk independently, thus explaining Javen’s need for a motorised wheelchair and a spinal correctional surgery he had to undergo when he was in Primary 2. Children with SMA2 may also develop feeding and respiratory problems, which explains Javen’s need for tube-feeding and the multiple hospitalisation trips because of a collapsed lung.
Javen follows a strict regime of 6 meals, given every 3 hours via tube-feeding. He doesn’t like to consume egg yolks because of a swallowing problem. He needs to be given a minimum of 1.4 litres of liquids. Owing to Javen’s condition, sticking to a daily schedule of planned rest time, play time and study time is critical to his health, and at times, life-saving. “We made sure we teach Javen time management skills from young. Once he masters time management, his life will be more orderly and I know that he can take care of himself even when Daddy (Javen’s father) and I are not around,” Regine explained.
Javen’s parents’ motivation to instil essential life skills, such as time and money management to Javen from young is so that he has a fair chance of leading an independent life in future. During trips to the supermarket, Javen’s parents made him responsible to assess whether the items are expensive, make payments and ensure he was given the correct change by the cashier. “I want Javen to appreciate the hard work Daddy puts in as the sole breadwinner. He has also begun saving money extensively for rainy days such as medical emergencies. He has many piggy banks!” Regine said proudly.
Javen also derived a sense of satisfaction by seeing his savings grow and he felt it was substantial enough, he exchanged his collection of coins for the dollar notes with the owner of the mama-shop auntie at his block.
Javen’s condition means that frequent hospitalisation and surgeries are part and parcel of his and the family’s life. Javen has already gone for three surgeries with a recovery period lasting between two to three months. Recalling his experience undergoing the recent correctional spinal surgery, Javen winced and said, “It hurts…very much.” He lifted up his T-shirt to showcase his surgery scars as if these were his personal badges of honour and burst into a sudden exclamation, “The surgery experience was verrrrrrrrrrrrrrrrrrrrry painful!”
Stroking Javen’s hand, as if to comfort him, Regine explained, “After his surgery, he was completely bedridden and did not attend school for one school term. His attendance was barely 35% and yet, he managed to get into the top class for P3.” Regine beamed with pride. To take Javen’s mind off the pain associated with surgeries, reading becomes an integrated part of his life. He reads extensively and a wide spectrum of English books, and watches edutainment channels such as National Geographic.
The most challenging obstacle the family has to endure is the possibility of losing Javen. In 2015 and 2019, they almost lost Javen due to a collapsed lung. Seeming aware of his health condition, Javen has already written his will.
Despite the challenges of bringing up a child with SMA2, challenges that are unimaginable by others, she finds joy and satisfaction giving back to the community. Since 2019, Regine has been involved in a weekly community project, which is now called Fridge Restock Community SG. Every Tuesday, its volunteers, grouped into “drivers” and “rescuers”, collect surplus produce from Pasir Panjang Wholesale Centre, then drive around the island to help restock community fridges. Every Thursday, Regine also distributes collected vegetables to residents from needy households in Yishun South Zone C, as well as to the Town Council cleaners. The “uglier” vegetables are then passed to community gardeners for composting purposes. Occasionally, Regine also asked Javen to participate in the volunteer work.
“Other than Javen’s respiratory problems, he is healthy, intellectually okay, and attends school like a normal child. I am very content. Everyone can help others; it’s a matter of whether you want to do it. Doing this volunteer project also builds up my confidence, introduces Javen to new adventures and sparks his creativity.”
It is Regine’s hope that more Singaporeans are made aware of the condition of SMA. “Awareness will bring security to the patient and the family”, Regine added. While sharing related stories in the media is critical to creating greater awareness, Regine feels that sharing and educating the people she meets one by one is equally important. She uses other people’s inquiries as precious teachable moments.
“Once, while taking Javen and I rode the lift with another young boy and his mother. The young boy started asking why Javen is in a wheelchair. I explained that ‘GorGor (big brother) is a wheelchair boy. He cannot walk, that’s why he is in a wheelchair.’ But, the parent of the curious child quickly shooed him away and as the lift door opened, she said, ‘Don’t see, don’t see, quickly go, go, go’,” Regine recalled with a slight shake of her head. She attributed this mother’s behaviour to the lack of awareness.
“I think It is because parents find it hard to explain to their children about a medical condition they have no knowledge of. That’s why I made it a point, whenever such an occasion arises, I will take time to explain to everyone I meet who asks about Javen’s condition.”