Can you believe that Parenthood Magazine is 20 years old?! That’s right, we’re celebrating our 20th Anniversary this year, and to mark the occasion we wanted to honour an outstanding mother with the most inspiring story of her motherhood journey. 

In June, we called out to our Facebook fans to nominate a mummy whom they know of that has an inspiring motherhood story, a story that has empowered them, a story that has moved them or touched their hearts in any sort of way.

This mother would not only bring back an award trophy, but also receive a 3D2N Stay at Impiana KLCC Hotel worth RM2,000 and a Shopping Spree at IKEA worth RM1,500!

After hundreds of entries with some truly amazing stories, one mother stood out and that was Ms Yap Sook Yee who was quietly nominated by her friend, Tan May Lee.

To summarize, Sook Yee is the mother to Branden who was diagnosed with Spinal Muscular Atrophy (SMA) at the age of one.

Since then, she has been fully committed to bringing awareness to SMA by engaging with the SMA community, advocating for SMA drugs to be made available in Malaysia and also co-founded WeCareJourney, a social enterprise dedicated to the treatment of SMA, the number one genetic cause of death for infants.

Intrigued with what was presented to us, we reached out to Yap Sook Yee, and this is her story.

 

 

Growing Up With Branden

Sook Yee is a mother of two boys – Jaden, 13 and Branden, 10. Her journey through motherhood started just like any typical mum who gave birth to their first child. Three years later, she gave birth to another boy, but this time, her journey was a little different. Branden was admitted to the ICU at birth due to pneumonia and spent 10 days there. 

 

 

6 months later, Sook Yee and her husband, Edmund Lim noticed that Branden was not achieving the milestones that his brother had, such as sitting up or crawling. They consulted a few doctors and was assured again and again that every child was different in achieving their milestones.

 

Through ‘mother’s instinct’, Sook Yee felt that something was not right. 

 

When Branden reached the age of one, she had him tested for various diseases that could cause hypotonia since he had the symptoms of not sitting up, crawling or putting on enough weight. A month after Branden’s birthday, he was diagnosed with a rare terminal genetic condition called Spinal Muscular Atrophy (SMA) and was told that he only had one more year to live.

 

Due to the time factor, Sook Yee and her husband reached out to other parents with SMA children and tried looking for answers through the international community. They consulted numerous other doctors and were given the same answer- that Branden would not live past 2 years old.

 

Refusing to give up, Sook Yee and her husband started a group on Facebook called Branden-Growing Up With Spinal Muscular Atrophy In Malaysia that garnered more and more parents who got in touch with them to share their support. Initially, the group was set up to spread news among family and friends in hopes to reach out to other families with an SMA child. 

 

 

After a few weeks, they finally got  in touch with a girl who was 17 years old at that time. Alicia and her family gave them hope to do the best that they can.  Since then, Sook Yee and Edmund decided to keep their friends and family informed with Branden’s journey to share and create awareness on SMA and rare diseases.  

 

“It is also a platform for us to keep all the memories, good or bad, in this beautiful journey as a family,” says Sook Yee.

 

Challenges Along the Way

According to Sook Yee, there were many challenges – but the most challenging time was when Branden was 3 years old till 6 years old. He was frequently admitted to the hospital due to pneumonia. Each hospital stay was about 2 weeks. While Sook Yee stayed in the hospital with Branden, her elder son, Jaden was taken care by her mother-in-law and husband, and her siblings would help out by sending food to her in the hospital. 

 

 

“The stress and fear of losing Branden to pneumonia was difficult, lack of sleep and not being able to help Branden take away his pain from frequent suctioning was very challenging. I had to be strong for him, not cry in front of him and at the same time missing Jaden who was only 6 years old then,” she said.

 

WeCareJourney

In 2016, Sook Yee and Edmund started an NGO called Persatuan WeCareJourney. With a vision to champion C.A.R.E and support for families with SMA & disabilities, their aim is to give patients and families the information and resources they need to live active, engaged, and hopeful lives in today’s world.

 

 

On December 23, 2016, the United States Food and Drug Administration announced that it had approved Spinraza, the first-ever approved drug therapy for SMA. With many countries fighting to get access and funding for this costly drug, WeCareJourney is also committed to advocacy and to motivate stakeholders to take proper action to uphold the right to life and resolve the inequity.

 

At the same time, they are driving hard to strengthen relationships with relevant biotech and pharmaceutical companies to run clinical trials here, or to get Malaysian patients recruited into trials overseas (one case has been successful).

 

For more information on WeCareJourney, visit www.wecarejourney.org 

 

Special Thanks from Sook Yee

It takes a village to raise a child, a mum can do so much but not alone. 

I’d like to express my gratitude to my husband who is very supportive and a great dad to the kids. A marriage is a partnership, parenting is like setting the vision and values of both husband and wife for the children and to keep working on it. It is a constant roller coaster ride, with lots of patience and love, the ride can be very meaningful. 

As for my mum and dad, they have shown me what unconditional love is, and their parenting values has made me who I am today as a mum. My siblings are my pillar of strength and shoulder to cry on, I am blessed.

To my mother-in-law, I thank her for helping us in the house and supporting us by taking care of Jaden, especially in the first few years when I became a mum and had a career.
To all my friends and relatives and the parents with SMA child/ children and other disabilities, thank you for your support and love.