Ad
Kids

Smiling Despite Challenges: Caring for a child with SMA

Share on WhatsApp Google+ Pinterest LinkedIn Tumblr

When you meet the Lims, they appear to be an ordinary couple. Getting to know them, however, allows you to see their extraordinary parenting skills.

The parents of Branden and Jaden give you little indication that their lives are slightly different from the average family. Edmund Lim and Yap Sook Yee first discovered spinal muscular atrophy (SMA) when their youngest, Branden was diagnosed at 13 months.

SMA is a rare genetic neuromuscular disease and impacts the nerves controlling respiration and movement. Branden, now seven years old, needs support to sit and stand, and constant medical care.

The Lims constantly endure the challenges of this rare disease that may severely affect Branden’s development.  They have constant hospital visits and long waiting hours for treatment.

Energised by smiling


But the Lims remain unfazed. How do they do it?

They find that the simple act of smiling gives them energy to care for their two sons, and do more. They run their homegrown movement weCAREjourney, a non-profit organisation set up to educate others about SMA and rare diseases.

The couple uses the acronym SMILE as a motivator to charge them up. “S stands for support, M is to move on, I to interact, L is Live and E to empower,” explains 44-year-old Lim.

The journey of the Lims

Three years ago, they set up weCAREjourney as a portal.  The site was modelled on travel rating site TripAdvisor. The intention was to offer a directory of disabled and therapy facilities rated by the community. This was to allow caregivers and families easy access to such services.

“We then wanted these users to offer reviews and recommendations, turning the site into a central information exchange where both therapists and families could be matched accurately,” Lim said.

But through trial and error, they found that the site was not effective. Many parents and caregivers preferred to use WhatsApp instead. “That made us rethink of our strategies, and using a four-pillar approach and the acronym CARE, we thought about new campaigns and events to continue  our work,” Lim said.

Caring for others

C stood for care and connect, A is for Awareness, R is for rehabilitation and E to empower and educate.

“One of the ideas that came out of this approach is to create Joe and Bib, two characters that people could identify with easily,” shared 43-year-old Yap. Joe and Bib are stuffed toys.  Joe is a rabbit, needing support of a bear called Bib, and is pictured being pushed around in a wheelbarrow.

These characters reflect the values of teamwork, friendship and support. Traits that the Lims as parents want to inculcate in their two sons and the communities they work with. The toys are made by refugees and sold at RM120 as a way to sustain weCAREjourney.

Painting positively

We find that the Lims are a “power couple” of sorts.  They are constantly powering on to devise ideas and programmes to educate and empower other families facing similar obstacles.

As an example, they turn Branden’s painting therapy into a vehicle to market weCAREjourney.  Branden’s artwork is a regular feature of their campaigns.

Another example – they run demonstrations of cough assist machines for poor families. These machines assist SMA patients with weak muscular systems by helping them breath better and expel phlegm or liquid from their lungs to prevent infection.

The Lims also work on ways to introduce more clinical trials and SMA approved drugs to the community. They collaborate with policymakers and the medical community, through their work with the Asian Rare Disease Network.

The Lims plan to run a sibling themed programme in the future. They want to set the right examples for Branden and Jaden.  “We know that sometimes siblings in families with a special child may get overlooked,” Lim says.

So, amidst all the work that they do, the Lims constantly remind themselves to stay close as a family.

 

Do you know of parents or groups out there doing great work to help children and families? Drop us a line at [email protected] if you think there are unsung heroes out there that should be featured.

Susan Tam is a freelance journalist based in Kuala Lumpur, Malaysia. She has reported on current affairs for Al Jazeera English TV, Singapore Press Holdings, and The Star. Susan is also a certified yoga instructor with over a decade of yoga experience, under the Malaysian Association of Yoga Instructors (MAYI). Her prenatal yoga instructor certification is qualified by Surya Yoga’s 20-hour intensive training programme. She and partner Joanna Audrey offer prenatal yoga classes at Fitology Bangsar, every Saturday at 2pm.

Comments are closed.