Feeling free in water: 10-year-old boy with spinal muscular atrophy learns to defy physical limits

SINGAPORE – When Bryan Lee was born nearly 11 years ago, his parents noticed that his legs appeared weak and lacked strength.

The discovery came as a surprise to his mother, Madam Dorothy Yeo, whose pregnancy had been uncomplicated, with no signs that her baby was not developing normally.

Doctors initially told Madam Yeo and her husband, Mr Stephen Lee, that Bryan had club feet – a condition where a baby’s feet are turned inwards and downwards. Then another specialist said he had Charcot-Marie-Tooth disease, a nerve disorder which weakens muscles, especially in the arms and legs.

At seven months old, Bryan was eventually diagnosed with spinal muscular atrophy after a blood test done at the National University Hospital. It is a rare genetic condition that causes muscles to weaken over time.

The news was devastating, said Mr Lee, 52, who works in the information technology industry. “Parents who don’t have kids with this condition will never understand, because a cure for this is close to zero.”

“We had to face it. So we thought, let’s give him a happy childhood... He can’t walk, but he can think.”

Nearly a decade on, Bryan is now in Primary 5 at Yumin Primary School, and in many ways, a typical 10-year-old.

He drops “six seven” at opportune moments, enjoys playing games on his phone, and indulges in comics.

But he is happiest when he is in the pool.

Bryan was seven when he started learning to swim. For someone in a wheelchair who has spent much of his life navigating physical limitations, the water offered something rare – independence and a chance to move freely.

“In the water, I’m free, like floating in a bottomless abyss. I can do whatever I want,” he said.

Apart from giving him the confidence to try new sports in school, like frisbee and badminton, he said swimming also made him stronger.

“I used to be skinny and weak. Now I’m stout, buff, tougher, healthier and stronger,” said Bryan, who is an only child.

His parents take him to weekly swimming sessions at the swimming complex in the Bedok community hub.

As he learnt to swim independently, improved his strokes and covered longer distances, his coaches encouraged him to take part in competitions.

While he felt nervous at first, Bryan said he is inspired by para-athletes like Yip Pin Xiu and Theresa Goh, and hopes to represent Singapore in international swimming competitions one day.

He made his competitive swimming debut in September 2024 at the National Youth Para Swimming Championships. To date, he has taken part in 12 swimming competitions.

Tough road for inclusivity

Reaching a stage where Bryan’s physical limitations no longer define his daily life was a hard-won journey, said Madam Yeo.

By the time he turned seven, he had already undergone three operations.

The first was a keyhole surgery to correct his club feet when he was just three months old.

His first major surgery, to correct the severely tight tendons behind his knees, took place when he was five.

The experience was traumatic for Bryan, said Madam Yeo, who is now in her 40s and works in the financial services industry. “For three weeks after the operation, he would wake up at night screaming.”

“I can never forget. He’d cry, ‘save me, help me’. It was really scary.”

His parents sought psychological help for Bryan, and his recovery – both mental or physical – took months.

Medical procedures aside, everyday life also presented a host of challenges.

Enrolling Bryan in pre-school proved difficult. Several centres told his parents they could not support a child with his condition even when they offered full-time assistance.

Said Mr Lee: “It was shocking. Inclusivity in Singapore is better now, but back then... They see a wheelchair and they say no.”

He was eventually enrolled in Star Learners @ Changi Simei.

Even now, moving around remains a daily struggle – from lifts being crowded with able-bodied users to wheelchair-accessible toilets being occupied by those who do not need to use them, said Madam Yeo.

Looking beyond his limits

Bryan started to notice he was different as early as in kindergarten. He would ask his parents why he was different, and hit his legs in frustration.

His parents knew they had to help him come to terms with his disability.

Turning to his faith, Mr Lee told Bryan: “God chops (stamps) every baby before birth. When he realised he forgot to chop you, he put another chop to make sure you have loving parents.”

People still stare when they see his wheelchair, and children sometimes ask innocent but blunt questions about his legs.

Bryan’s parents encourage him not to assume malice, and regard such reactions as simple curiosity.

Bryan has learnt to cope, though he still experiences the occasional bullying and name-calling in school.

He keeps a small circle of friends who share similar interests, such as raising ant colonies at home.

His swimming coach, Ms Ho Ying Shan, 39, said Bryan always does his best.

“He communicates openly by sharing concerns and asking for modified techniques when he feels uncomfortable due to restricted movements and pain. We work together to adapt strokes to his ability,” she said.

Mr Elnaam Htut, 34, Bryan’s physiotherapist from social service agency AWWA, said Bryan has grown significantly in confidence over the last four years. He has weekly therapy sessions.

“Initially, he was very quiet and did not want to share. Getting him to talk to you was a challenge. Now, he will take control of the whole conversation from the start to the end of the therapy sessions,” he said.

Bryan’s parents hope schools can raise more awareness of achievements of students with disabilities so that their peers can see past their limitations.

“If children learn young, they will grow up kinder... A kind word, a smile, or saying ‘come let’s go and play together’. It really goes a long way for a child with any disability because they feel that you regard them as a person,” said Madam Yeo.

When asked about his career ambitions, Bryan found it hard to choose just one.

“To become a national athlete, a biologist and a planetary scientist,” he said.

Reflecting on his journey so far, Bryan encouraged children with similar disabilities not to limit themselves, and to have the courage to open up and try new things.

“Being different doesn’t mean you can’t do great things. Everyone has their own strengths.”