I always want to instill to the parents to say that there is still hope do not give up so easily, because there are a lot of challenges at the same time. I will not sugarcoat everything. I would just tell them the journey is really tough, but you, there is hope that, you know, you can still live a quality life, that there are still things that you can do.
Yap Sook Yee
The final episode of Season 4 is with a social enterprise entrepreneur from Malaysia, Yap Sook Yee. It is also a bonus episode.
Sook Yee is the co-founder of Friendenarts.com. She is also the co-founder of WeCareJourney.org. WeCareJourney is an association that helps parents and caregivers with children who are born with Spinal Muscular Atrophy (SMA).
She started her social enterprise, FriendenArts, to sell the art and art merchandise that her two sons, Jaden and Branden, create. Treatments for the two boys are expensive and Sook Yee and her husband wanted to use their boys’ art and art products as a way to fund the treatments.
Branden was diagnosed with Spinal Muscular Atrophy (SMA) at the age of one. It is a rare terminal genetic condition and Sook Yee and her husband were told that their son only had one more year to live. Sook Yee and her husband tried looking for more positive answers from doctors and everyone told them the same thing – that Branden would not live past 2 years old.
Today, Branden is 11 years old.
We have to take our own pictures, look for suppliers we can work with. And because I want to print it on a very special kind of paper to make sure to show that the art has got very unique features, which are the strokes and all with Brendan’s fingers – it’s very unique art. I want it to be printed on really good quality paper to be able to bring out that uniqueness.
Sook Yee has been tireless in bringing awareness about SMA to parents and medical professionals. She and her husband advocate for the SMA community while lobbying for SMA drugs to be made available in Malaysia. She is seeing changes in the landscape and conversations about SMA. When before there seemed to be no hope, now she advises parents to never give up. Her Branden is living proof!
With the work that she does, she says she is most inspired by children with chronic illnesses. She treasures and admires “the strength and resilience they demonstrate despite all that they have to go through. In spite of their pain and treatments, these children have the purest and most genuine smiles and they need very little to be happy.”
Nowadays with the pandemic and all that things change so fast. So the bigger you are, I think the, the more difficult for things to change, but if you’re small and agile, you can move faster. You can make decisions faster because it’s your own personal business.
Sook Yee is most proud that she managed to change the landscape of a terminal rare disease in Malaysia, getting treatments for her son and other children with SMA and creating a platform to empower these marginalized children.
On a less serious note, she is also proud that she overcame her fear of cats!
As we get deeper into the conversation, you will hear about how she markets her social enterprise and her association using the creativity and competencies that she had acquired in the corporate world. She also speaks about death, gratitude, dreams, being strong and finding her purpose in life.