Father shares wisdom learnt from teenage son with spinal muscular atrophy

Lim says his son Branden who has SMA, possesses an EQ way beyond his 13 years. Photos: Edmund Lim

He has an emotional maturity beyond his 13 years and his eyes always spark with joy whenever he talks about something that interests or excites him, says Edmund Lim, 50, of his younger son Branden.

This might not seem an unusual perception for a proud father to have of his son, but Branden is no ordinary child. When he was about a year old, he was diagnosed with spinal muscular atrophy (SMA), a genetic disease affecting the central and peripheral nervous system and voluntary muscle movement (skeletal muscle).

"This essentially means that he is 95% paralysed and needs help with his daily life and almost everything that others often take for granted," he says.

The father-of-two goes on to describe a day with his younger son:

“From the moment he wakes up to when he goes to bed at night, my wife and I need to help him. We remove his ventilator and cough assist machine, which he needs when sleeping at night. We help him change clothes, brush his teeth, urinate, bathe, etc.

“My wife and I take turns carrying him - piggy-back or cradling style – upstairs and downstairs. During mealtimes, we’ve to feed him and on good days, he can feed himself, with assistance.

“We're there for him when he does his art as his elbow needs to be supported when he paints, and when he goes to homeschool (online), and his brother Jaden accompanies him during recreation time when he plays online games.

“When he has an afternoon nap, I watch over him because SMA survivors are at high risk of choking and dying in their sleep due to a weakened respiratory system.”

Read more: One couple's fight to get treatment for their son with SMA

(from left) Lim with his wife Yap, and their two sons, Branden and Jaden.

Caring for Branden isn't an easy task, admits the commercial manager who resigned from his job in 2015 to look after his son together with his wife Yap Sook Yee, 49.

"I felt that parenting a special child shouldn't be just a mother’s job," he says.

"A lot of people may not agree with my decision and told me as the father, I should continue working to pay the bills and let my wife take care of the child," he recalls, adding that his wife also took a break from her job in retail marketing when Jaden was born 16 years ago and she resigned after Branden was diagnosed with SMA.

But Lim believes that if he hadn't made the sacrifice, his son wouldn't have survived.

"When a child is diagnosed with SMA, there are often other complications involved and even health professionals aren't optimistic about their chances of survival," he explains.

"It was a difficult decision but I don't regret leaving my job to look after Branden full-time," he says.

Their journey hasn't been easy but Lim believes that parenting Branden together with his wife as a team made the difference.

Together, they started WeCareJourney, a non-profit organisation to help advocate for those living with SMA and to educate the public about the importance of an inclusive society through activities and events.They also started FriendenArts as a social enterprise to help other families in a similar situation to rise above their circumstances and earn an income.

His fatherhood journey

Lim's son Branden who suffers from spinal muscular atrophy (SMA), is able to paint with his 'floppy hands' but needs help to support his elbows.

Read more: Treatment is not a cure for patients with SMA

As the parent of a special child, your whole life needs to be re-configured to revolve around caring for your child. You’ve to take into consideration every decision you make and how it affects your child, advises Lim.

“Financially, career wise, socially, everything you wanted by a certain age such as leisure pursuits, overseas family holidays, socialising with friends – would become secondary,” he says.

“Also, most fathers expect their children to grow up, become stronger and more independent. But when your child has a progressive condition, it’s in reverse – they could be getting worse, weaker, and for some, dying.

“You need to understand your life journey and be open to change. Discard what you expected before and embrace the new paths. It can be challenging but it can also be a fulfilling adventure,” he adds.

Lim also urges fathers/parents to “believe in your child and find the good in them”.

Proud parents: Lim and wife Yap with their two sons at his younger son, Branden's first solo art exhibition.

Read more: SMA Awareness Month: Activists say 'imperative to test whether you're a carrier'

“Having a child that’s not typical is tough, but each child has something within them that’s special. It’s not necessarily something outstanding, it can even be something simple, he says.

“Branden is incredibly positive in life. I was having a chat with him at the playground one day when Jaden was playing basketball with his friends and while he was happy for Jaden, of course he was unhappy he wasn’t able to join.

“When I asked him, ‘Does it bother you? Are you sad?’, his reply surprised me. In his simple way, he said he deals with his sadness by ‘erasing the past and looking forward to the future’, recalls Lim, adding that he’s learnt from his son’s simple wisdom.

Lim advises parents of special children not to focus all their energies trying to make their child ‘normal’.

“Forget about going to a ‘normal’ school or getting a ‘normal’ job. Don’t force your child to be what they’re not inclined towards. There are so many ways they can make a difference in the community and for themselves.”

“If you look within your child, accept them as who they are, help them discover their strengths and support them to see how far they can go, there are so many pathways they can take in life. Not everyone is meant to a doctor or a lawyer,” says Lim.

“Many think art can’t earn a living but that’s not true. Branden has had his first solo exhibition recently and 47 pieces of artwork were sold, the biggest one at RM6k! He’s also received two commissions from large corporations which totalled RM10k.

“But it’s not easy, you’ve to work for it. We’ve had to innovate certain things so that he can paint, either sitting up or lying down sideways, using a brush, his hands or fingers,” he says.

Lim with his two sons Branden and Jaden enjoying their family time at the park.

Lim’s elder son Jaden nods his head in agreement.

When asked how he divides his time fairly between both his children since Branden needs more time and attention, Lim says he does “prioritise time and activities with Jaden which his elder son enjoys”.

“When I went for an overseas conference, I brought Jaden along. It was an epic trip to New York City and Washington DC, in the United States, and we had a good father-son bonding time together.

“Locally too – just him and me – we’ve gone on off-the-beaten-rack overnight trips to places like the Lenggong prehistoric sites,” he says. “We’ve also gone on day trips such as cycling in Putrajaya and watching the raptors at Tanjung Tuan, Negri Sembilan.

“We’ve also talked about Branden’s condition. Both brothers have a good relationship and Jaden says even though Branden’s condition limits many things they could do together as brothers, Branden makes the best of his situation and looks at things positively, and that's something he's learnt from," he concludes.