Malaysiakini: Oct 29th, 2017

When Malaysiakini came at Branden Lim's home in Damansara Jaya for an interview, he was testing out a prototype wheelchair.

"Wheeee," the seven-year-old exclaimed as he used an iPad to manage his jerky wheelchair.

Branden suffers from a severe case of spinal muscular atrophy, which causes motor neuron loss and muscle degeneration.

The wheelchair is a prototype for a line of smarter and more responsive mobility aids, according to his parents, Edmund Lim and Yap Sook Yee.

 

“So it’s the worst one?” Branden’s 10-year-old brother Jaden asked cheekily.

“It’s the first one,” their father corrected with a laugh, as a delighted Branden continued to move the jerking wheelchair around the living room.

The familial banter continues in the latter half of the interview when Branden obliged with a painting.

 

His family recently earned a $5,000 grant from the United Nations Children's Fund (UNICEF) and Petrosains for a grasping assistance device that will help Branden and others with weak fine motor skills, strength, and dexterity.

Branden demonstrated how he paints with the use of the assistive gadget, which is a Velcro strap coupled to a plastic device that grabs a paintbrush or marker pen and wraps around his hand.

Branden resorted to using his fingers halfway through the painting. "He still prefers to use his fingers," his father explained.

He scribbled his name on the canvas, occasionally seeking assistance from his mother. Branden finished the red and blue painting with a touch of green.

Immediately after his first birthday, he tested positive for SMA. Edmund said the first few weeks after receiving the news were "traumatic." They had no one to contact and doctors couldn't give them much hope.

"(But) we turned ourselves to our children. It was clear that Branden hadn't given up." The Lim family seemed to have to fight alone.

However, when I came into contact with other families in a similar situation, it was only a few years later that I realized that they were not the only ones. Finding family support in a similar situation was only the first step when the Lim family realized that their knowledge and expertise in SMA was limited in the country. After spending countless hours researching
SMA, they found that treatment and treatment of SMA abroad was far more advanced. It created a world of difference.

For example, Branden was hospitalized for pneumonia at least once a year because his muscles were weak and he could not cope with his cough.