From Caregiver to Changemaker: A Father’s Mission to Support Families Facing Rare Disorders

It first started out as a suspected case of myopia, but eye specialists determined that Phua Wenjie, then aged six, had perfect eyesight.

Next, Wenjie started being unsure of his steps when climbing the stairs, which child development specialists dismissed as a momentary development delay.

It was only after the difference between his handwriting earlier in the year and later was observed that he was referred to a pediatric neurologist and was eventually diagnosed with X-linked Adrenoleukodystrophy.

At six years old, Wenjie's life would never be the same again.
 

TURNING PAIN INTO PURPOSE

In simple terms, Wenjie has a defective gene that is unable to break down a type of fat. Over time, this causes inflammation of the central nervous system which affects the transmission of brain signals.

X-linked Adrenoleukodystrophy is one of many types of rare diseases. It is a progressive and often aggressive neurodegenerative disorder that primarily affects males. Wenjie lost his ability to eat, drink and communicate almost overnight, rendering him dependent on his family for daily living over the past decade.

As his father, Wee Seng was devastated upon receiving Wenjie's diagnosis. But he knew he had to be strong for his family, especially with two other kids in tow.

That was when he came across Rare Disorders Society Singapore (RDSS).

Established in 2011, RDSS aims to enhance the quality of life for families and patients with rare diseases through timely interventions.

Wee Seng and his family joined RDSS upon Wenjie's diagnosis in 2014 as they wanted to be part of a community where they could turn to for help. Not only did he find support, Wee Seng also found a passion in aiding parents facing similar situations.

This passion led him to join RDSS’s management committee seven years later. And in 2023, he decided to step up to the Executive Director & Chief Rare Advocate role upon the team’s request.

Wee Seng’s main responsibility is to lead the executive team in transforming RDSS into a Patient Organisation (PO). Unlike a Patient Advocacy Group, a PO is able to formally employ staff to manage key work streams. This shift will also support the establishment of formal functions such as fundraising, partnerships, research, social work and more.

As a business owner himself, Wee Seng is not unfamiliar with the importance of funding to support the growth and work of an organisation.

“Currently, we care for more than 200 patients, with around 150 different rare diseases, impacting more than 800 lives, which include those living with the patients,” he explained. He highlighted that rare diseases affect people in different ways and require complex care, especially for patients who have invisible who are children with co-morbidities and require several life-sustaining medical equipment in their daily lives.

However, without awareness and funding, it is difficult to attract capable and committed professionals to join their cause, Wee Seng continued.

So, when he heard about RESSEC's Specialist Diploma in Social Entrepreneurship (SDSE), his interest was piqued.
 

CAUSE-FUELLED CLASSROOM

Started in July 2024, SDSE is a six-month part-time course that equips learners with the necessary skill sets to leverage businesses and impact the social service sector in a meaningful way.

For Wee Seng, he had planned to start a social enterprise initiative to support the funding that RDSS needs — and SDSE offered him the time and space to work on it in real time.

Through one of the course modules, he identified the unfair advantages and key resources required for his business idea to be successful.

“The programme is designed so that each module and assignment feeds into the next and builds up to the final project,” he explained. “However, there is also flexibility to allow us to rethink, regroup and restrategise with new knowledge acquired and insights.

“It helps me to think deeper to create stakeholder mapping for better stakeholder engagement.”

Although the course is rigorous and intensive, with twice-weekly night classes for six months, it also has systems to help learners—who are mainly full-time working professionals—catch up on learnings offline. Assignment deadlines can also be negotiated accordingly, Wee Seng added.

But most importantly, it was the constant encouragement and support from the programme staff, faculty members and fellow course mates that made the journey enjoyable, he acknowledged.

To anyone who is interested in social entrepreneurship, Wee Seng recognises that it is tough because “it is a business with double or triple bottom-line" in an ever-evolving environment”.

However, you do not need to struggle alone, he also pointed out.

“There are resources and communities you could rely on in this journey,” Wee Seng emphasises.

“If you are in the social entrepreneurship journey or thinking of embarking on one, please do not wait. There is no better time than now to join this programme where you will gain knowledge, resources, a supportive community and a specialist diploma in just six months!”