Malaysians Kini

Living life in the face of muscular atrophy

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MALAYSIANS KINI | Branden Lim was testing out a prototype wheelchair when Malaysiakini arrived at his home in Damansara Jaya for an interview.

“Wheeee,” the seven-year-old said with delight as he navigated his jerky wheelchair using an iPad.

Branden has a severe form of spinal muscular atrophy, which leads to loss of motor neurons and progressive muscle degeneration.

His parents, Edmund Lim and Yap Sook Yee, explained that the wheelchair is a prototype for a line of smarter and more responsive mobility aids.

“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 won a grant of US$5,000 in a design competition, jointly organised by the United Nations Children’s Fund (Unicef) and Petrosains, for a gripping assistive device to help Branden and others with limited fine motor skills, strength and dexterity.

Branden showed off how he paints with the help of the assistive device, which wraps around his hand with a Velcro strap attached to a plastic device that grips a paintbrush or marker pen.

Midway through the painting, Branden resorted to using his fingers. “He is still more comfortable using his fingers,” said his father.

He wrote out his name on the painting, occasionally looking to his mother for help. When the red and blue painting with a touch of green was ready, Branden declared "Guess!"

After much bantering among the four family members, Branden revealed it to be a "robot crab".

Branden had started painting as a form of occupational therapy but gradually lost the ability to grip paintbrushes on his own as the muscle atrophy progressed.

Support network

Spinal muscular atrophy (SMA) is a rare genetic disease which affects the part of the nervous system that controls voluntary muscle movement.

Branden’s parents first noticed the symptoms in his infancy, when they realised he missed physical milestones and did not gain sufficient weight.

“We were trying to be positive, we always thought he was a ‘relaxed’ baby,” Edmund said.

As Branden did not catch up in his development as an infant, his mother decided to send him for genetic testing for several conditions.

Shortly after his first birthday, the test results came back positive for SMA.

Edmund related that the first few weeks upon receiving the news was "traumatic".

They did not have anyone to connect with and doctors were not able to offer much hope.

“(But) we took the cue from our child. It was quite obvious that Branden wasn’t giving up,” the father said.

For the Lim family, it appeared that they had to fight the battle on their own.

But it was a couple of years later that the family realised they were not alone, as they came in contact with another family in a similar situation.

Finding support from families in a similar situation was only the first step as the Lim family realised that knowledge and expertise about SMA in the country are limited...