This 25-year-old has life-limiting muscular dystrophy. It’s not stopping him from cosplaying

SINGAPORE: Fans of role-playing games might sometimes picture themselves or even cosplay as their favourite character. Toh Wee Yang has a special reason to feel an affinity for one such character called Firefly.

But for the 25-year-old to cosplay as this young, silver-haired fighter — who soars through the air delivering fiery blows — something special would be required too.

Firefly, from the gacha game Honkai: Star Rail, suffers from Entropy Loss Syndrome, a fictional condition that gradually causes the character’s body to fade away.

“I can relate to her because it’s a bit similar to what I have,” Wee Yang said.

Since Primary One, he has lived with Duchenne muscular dystrophy, a genetic disorder characterised by progressive muscle degeneration and weakness. He has lost most of his mobility, is bedridden and uses a respirator to breathe.

He admires Firefly for her steely resolve and tireless quest to find the meaning of life despite her circumstances.

His mother, Ong Kim Huay, 62, described him in the same light. “Despite the challenges he’s faced, Wee Yang is far more resilient and positive than we are,” she said in Mandarin.

And on the morning of July 12, he was brimming with excitement. On this day, he was going to cosplay as Firefly, at an event that was his idea.

“I like to cosplay because it gives me the opportunity to assume another personality and not feel like myself,” he said.

CNA Insider chronicled his special day and how the many people who had rallied round him made it happen.

BECOMING FIREFLY

It is thanks to his eldest brother, Toh Wee Kiat, that Wee Yang has been captivated by anime since childhood.

But it was not until 2017, following a severe infection that led to a referral to HCA Hospice, that he was encouraged — by the staff — to try cosplay.

“At first, I was hesitant,” he recalled, reflecting on his reluctance to go out in costume. He has since overcome his nerves, however, and celebrated two birthday parties with cosplay themes.

This event marks his fourth time cosplaying, and his biggest event yet, with members of the cosplay community coming together in his honour.

Two of them, Janice Dermawan, 32, and Mandaraz Lim, 34, arrived at his house several hours before the event to help him get into character.

Along with 11 other cosplayers, they were recruited through mutual connections, following an Instagram post from a friend of an HCA staff member.

“I was personally excited to use our passions and hobbies in such a meaningful way,” said Lim, who skilfully applied cosmetics to Wee Yang’s face while guiding him through each step.

The process took about two hours — a breeze after two months of preparations to celebrate Wee Yang and their shared love of cosplay.

After his make-up was done, his parents helped him into his custom-made costume. He had been fitted for the outfit, tailored for him by 36-year-old cosplayer Andrea Tan, during several visits to his home over the weeks.

Once Wee Yang had put on his wig, his transformation into Firefly was complete. The group then left for Daily Mujo, a cafe in Bedok where the cosplay event would be held.

LAND OF DREAMS

When they arrived, they were greeted by the other cosplayers dressed as different characters in Honkai: Star Rail — and who had already transformed the cafe into Penacony, the utopian space station known as the Land of Dreams in the game.

Tan, one of the main organisers, felt it was quite apt for Wee Yang, as Penacony symbolised a place where people could pursue dreams they had longed for or buried deep.

The group of cosplayers was diverse, with members ranging from their mid-20s to late 30s. To attend the event, many had taken time off from jobs in fields such as data science, photography and user experience.

“Crimson” (not her real name), who is 25 and the youngest, even rushed down from her work as a microbiologist. She was dressed as Wee Yang’s favourite in-game knight, Jing Yuan.

The event’s programme mirrored actual gameplay, with Wee Yang in the role of the main protagonist, the Trailblazer, who navigates alternative scenarios, interacts with characters and completes missions to drive the storyline forward.

“It was truly rewarding seeing Wee Yang laughing and smiling during the role playing, especially when characters engaged in conflicts as dictated by the game’s lore,” Tan beamed.

Some of Wee Yang’s family donned their own anime-inspired outfits as they joined in the fun and helped him to complete various tasks.

The Toh family is close-knit, living in the same neighbourhood and seeing each other “every other day”, according to Wee Kiat, 37.

Initially, when Ong learnt of her youngest son’s diagnosis, she was consumed with worry. “We were constantly thinking about when the next challenge would arrive, … when he’d stop standing, walking or moving,” she recalled.

She has since learnt to live “day by day” and seize each moment of joy, such as this.

When it came to Wee Yang’s interest in cosplay, the family did not have any concerns. “His happiness is the most important; we’re happy to be bystanders,” Ong said. “Wherever he goes, we’ll just follow.”

If anything, Wee Kiat was pleasantly surprised at his brother’s penchant for costumes and dramatic make-up. After all, Wee Yang had always been shy — which was the impression his doctor, Chong Poh Heng, got when they first met in 2017.

“Wee Yang is a man of few words, very quiet, … perhaps by conditioning,” Chong commented, noting that people with life-limiting conditions tend not to give free rein to expression or their pursuits.

Wee Yang is both a beneficiary of and an inspiration behind Project Twilight, under whose auspices the cosplay event was held.

The offshoot initiative by HCA supports paediatric palliative patients who have exceeded their life expectancy, enabling them to explore their interests and fulfil their dreams to the fullest extent possible.

And it was Wee Yang who wanted to share his love of cosplay with the community, said Winiline Chan, 29, who heads Project Twilight.

His aim was to inspire others with similar physical limitations to pursue their passions and enjoy experiences like everyone else.

SAYING GOODBYE, BUT ONLY UNTIL NEXT TIME

As the event concluded at 5 p.m., everyone began taking group photos, reluctant to leave. Wee Yang was visibly happy, albeit tired, calling it one of his best cosplay experiences yet.

He was not the only one. “Throughout this entire process, I saw the best sides of everyone,” Lim remarked. “Cosplay (has) such an inclusive community; it truly allows everyone the freedom to express themselves.”

“While some of the cosplayers only met each other for the first time today,” Tan said, “we were all united by our shared goal of giving Wee Yang the best experience possible.”

A few cosplayers including herself planned to visit Wee Yang soon, she added. “He’s one of us, and he’s up to date on all the latest anime. ... We can chat with him like any other anime or gamer fan.”

The cosplayers would also be interested in hosting more such events in future, Lim and Tan agreed.

And that would be appreciated by patients such as those receiving paediatric palliative care, an area where HCA is the sole organisation conducting services outside hospitals.

“There are many hidden populations with individuals like Wee Yang,” said Chong, who is HCA’s medical director. “And it’s important to bring these young people into the spotlight and support them in living their lives to the fullest.”

This is a sentiment Wee Yang agrees with, and he is happy to be a Trailblazer in his own right for his community, redefining what it means to have a life-limiting condition.

“Everyone can do whatever they want to do, regardless of the mental or physical challenges they may face,” he said.