PETALING JAYA, Dec 13 — The laughter of the two brothers as they played with paint and created art inside an ice cream parlour sounds like a dream come true for any parents. Yet for Yap Sook Yee and Edmund Lim, the parents of five-year-old Branden and eight-year-old Jaden, this happy moment is not one they take for granted; it’s something they had to work hard for as a family.
Branden (lovingly referred to as “Branden Boy”) was diagnosed with Spinal Muscular Atrophy (SMA) at the tender age of 13 months. A rare genetic neuromuscular disease, SMA affects the nerves controlling respiration and movement.
This means Branden is unable to sit or stand without support and needs to undergo a wide range of therapies and paediatric medical care.
“When Branden was born, he was sent to ICU for eight days because he wasn’t able to clear his lungs,” recalls Yap. “Six months later, he still wasn’t crawling. We were worried about his delayed development and saw the doctors again when he was one year old. When the diagnosis of SMA came back, we were told to plan for only one more year as his severe disabilities will get worse over time. While we learned to accept the reality of living with SMA, we refused to give up.”
Lim adds, “Due to the weakness of voluntary muscles caused by SMA, Branden has shallow belly breathing. We have to perform chest percussion for him, which is patting him on his back, to make him cough and expel phlegm or liquids from his lungs. Right now we are also using a cough assistance machine at home to help with this.”
Once a month, Branden also requires a session with a professional physiotherapist and has started to see a speech therapist. However, Yap felt there must be something else that could be done to help her son.
“Branden was diagnosed when he was one year old. By time he was two years old, he couldn’t bring his arms above his head. I decided to let him try painting to improve the strength in his arms. So that’s how the ‘art jams’ started — at home.”
Since August, Sembilan Art Residency has been organising fortnightly art jamming session with Branden and his family at Inside Scoop Damansara Jaya. Yap recalls, “Serendipitously, we met Xin Yi from Sembilan Art Residency in early 2015 and she introduced us to Edmund Tan of Inside Scoop. Together, they created an art jamming space for Branden and Jaden outside the house.”
Various volunteers from the Sembilan Art Residency, including artist and former DJ Nicholas Choong and Russian-born illustrator Elena Kravchenko, have been on hand to supervise both Branden and Jaden as they experimented with sponges, dripping, splattering and painting.
Lim says, “Each artist has a different style, from line drawing to abstract art, giving Branden and Jaden different experiences. The artists themselves also ‘learned’ from the boys as children have this innate sense of art and colour. They haven’t learned what’s the right or wrong way to paint. They’re just having fun and expressing themselves.”
According to Yap, there might be a possible treatment for SMA as several drugs are currently in clinical trials in the US. She says, “Maybe in 5-10 years, this treatment will reach Malaysia. Till then, we have to maintain what we do to prevent the disorder from regressing further.”
As part of her ongoing campaign to raise awareness, Yap is the Vice-President of the Malaysian Rare Disorders Society (MRDS), a voluntary organization that looks out for the welfare of individuals and families affected by rare disorders. “What we wish most to do is help parents deal with the experience without feeling overwhelmed. There is still a stigma in society and parents do feel embarrassed. We want to share it is possible to live life like a normal family.”
Lim and Yap also founded weCAREjourney, a one-stop portal to improve the access between the disabled community and all providers of care and support. Lim says, “Our recent public art jam in 1 Mont Kiara had a healthy mix of participants — six disabled kids and 14 normal kids — playing together. Your life doesn’t have to come to a grinding halt because your child has a disorder or disability. Learn how to create living experiences by not focusing on their disability but their ability instead.”
Since the Art Jam at Inside Scoop began, Branden has completed more than 20 pieces of artwork. To raise further awareness of SMA, both Branden and Jaden will be exhibiting their artwork at Inside Scoop Damansara Jaya from the 13th to 19th December 2015. This event, held in conjunction with Inside Scoop’s second anniversary celebration, is aptly called The Scoop about Branden.
Visitors can participate in a silent auction of these artwork during the week-long bid period. As a way of contributing back to the community, Branden’s family will channel 30 per cent of net proceeds from the auction to MRDS while the remainder will go to Branden’s funds for support equipment such as a powered wheelchair and standing frame.
On December 17, there will be art activities for invited guests from 5pm onwards. To make the event even more special, Inside Scoop will also be giving away free ice cream from 7.30pm onwards till closing time!
For Inside Scoop founder Edmund Tan, providing the venue for this event and the ongoing art jams is simply a way of helping out a good cause. “Spending time with Branden Boy and his family has opened up our eyes, not only about SMA but also putting all our so-called problems in perspective for us.”
Looking at Branden’s cheeky smiles and his love for art, you can’t help but be inspired to live your life to the fullest too.
The Scoop about Branden
Exhibition: December 13-19, 2015
Special Event: December 17, 5pm till close
Venue: Inside Scoop Damansara Jaya
57, Jalan SS22/19, Petaling Jaya, Selangor
Open Mon-Thu 1pm-11pm; Fri-Sat 12.30pm-12am; Sun 12.30pm-11pm
To find out more about Branden Boy, visit the Facebook page: Branden — Growing Up With Spinal Muscular Atrophy (SMA). Also learn more about Malaysian Rare Disorders Society (MRDS) at www.mrds.org.my and weCAREjourney at wecarejourney.com.