“My muscles may be weakening, but I can still draw hope”
By
Carmen Chia
, 29 October 2024
Nicholas Tham, 21, who has Duchenne Muscular Dystrophy and has faced multiple life crises, is designing a print (not shown) for merchandise to raise funds for Singapore Christian Home where he lives. Photos courtesy of Nicholas Tham unless otherwise stated.
Nicholas Tham was six when his mother noticed his gait was different from other children and took him for a medical examination.
He was diagnosed with Duchenne Muscular Dystrophy (DMD), a genetic disorder in which muscles in the body are progressively lost over time. They include muscles in the limbs, heart and lungs.
“I felt sad when I was told that I would one day not be able to walk.” Nicholas, told Stories of Hope, recalling how his mother broke the news to him when he was seven. He is now 21.
Nicholas, around age four, before he was diagnosed with DMD.
Symptoms of DMD can show up as early as the age of two. With improved care, more people with Duchenne are living into their early 30s and beyond. The disorder is estimated to affect one out of every 3,000 male children.
Growing up with DMD
Nicholas gradually lost his ability to walk and, eventually, to stand when he was 12.
“At first I could still run, but very slowly because my muscles were very weak. My running speed was other people’s jogging speed,” Nicholas recalled.
As the condition progressed, Nicholas noticed his muscle strength deteriorating over time.
“At first I could still run, but very slowly … My running speed was other people’s jogging speed.”
“When I walk, I’d fall,” he explained.
When he started Primary Three, Nicholas needed a wheelchair to move around school.
He remembered feeling bored every Physical Education (PE) lesson as he would sit in a corner and watch his classmates play sports. When curious friends asked why he could not participate, Nicholas remained silent, not knowing how to explain his condition.
However, the gradual degeneration gave him time to accept his loss.
“I felt less sad after I got used to it.”
In Primary Three, Nicholas also discovered his passion and talent for drawing. It was during an art class when his teacher complimented his drawing.
Nicholas proudly shows off a sketch he made in his favourite style – doodle art.
It gave him the confidence that he could do something well in spite of his physical limitations.
Home away from home
When he was eight, Nicholas, together with his sister, was placed in a children’s home due to the lack of suitable caregivers.
Nicholas and his sister with their grandmother and aunt, who were their main caregivers before they passed away.
Not knowing how to cope with his anger and sadness, Nicholas was frequently in tears.
Yet amid the series of painful events, Nicholas experienced safety and stability at the children’s home.
Nicholas learnt to pray – a habit that helps him cope whenever he feels sad or angry.
Through chapel services there, Nicholas learnt about Jesus.
Subsequently, a few friends from the home invited him to join their weekly Bible study group and services at their church.
There, he learnt to pray – a habit that helps him cope whenever he feels sad or angry. The group was also a safe space for him to share about his struggles.
Nicholas developed a close relationship with one of the caregivers at the home. When his money was stolen by so-called friends in secondary school, Nicholas confided in this caregiver who sought justice for him.
More bad news
Nicholas was 15 when he discovered a lump on his body while showering.
It grew larger in the following weeks, and Nicholas’ caregiver took him for a medical examination.
Nicholas underwent surgery to remove the lump.
Afterwards, doctors broke the bad news that he had cancer. It was unrelated to DMD.
He underwent chemotherapy in the hospital, and could not attend school. During this period, he was placed on home study.
Nicholas with friends who visited him in the hospital while he was undergoing chemotherapy.
He also had difficulty sleeping as he often felt uncomfortable and anxious throughout his treatment – until one momentous encounter.
“Even though the room was usually cold, I felt warm. I also felt peaceful and comfortable.”
“One day at the hospital, I saw a sun (bright light) in the room.
“Even though the room was usually cold, I felt warm. I also felt peaceful and comfortable.
“After that, I could finally sleep well without discomfort,” said Nicholas.
Nicholas believes he had a personal encounter with God.
Round-the-clock care
When Nicholas was 18, the muscles in his heart and lungs had weakened to the point that he needed round-the-clock medical attention.
He was transferred to Singapore Christian Home (SCH) – the only home in Singapore with resources for 24/7 care of children and young persons with chronic medical conditions.
Nicholas was 20 when he had a near-death experience.
“It was very scary. I tried to breathe but I felt there wasn’t enough oxygen.”
“It was very scary. I tried to breathe but I felt there wasn’t enough oxygen,” he recalled.
In his semi-conscious state, he vaguely registered being rushed to hospital where he was given an oxygen mask and an injection.
“At that time I didn’t think much of the pain even though I am usually scared of needles,” he said, recalling his struggle to survive.
Nicholas was resuscitated in the nick of time.
This close call prompted Nicholas to consider the matter of death more seriously.
“I’m more afraid of the process of dying – becoming bed-bound.”
Having spoken to other sufferers of muscular dystrophy, Nicholas is well aware that his disorder would eventually progress to a terminal stage.
When asked how he feels about having to face the inevitable, Nicholas paused thoughtfully before answering: “I’m more afraid of the process of dying – becoming bed-bound.
“I have seen other patients at this stage – they are unable to move and require help for all their daily activities.”
Nicholas’ admits he fears being trapped in a paralysed body while fully conscious.
Nicholas finds comfort in knowing that one day he will have a new body in heaven.
Instead of dwelling on his worries, Nicholas is learning to focus on what he can control. This includes tasks and activities like drawing and playing games that he enjoys.
As for what he is unable to control, Nicholas commits it all to God. He prays, usually before bedtime, for God to sustain his health and to heal him from DMD.
Even if he does not receive physical healing here on earth, Nicholas finds comfort in knowing that one day he will have a new body in heaven.
Gifted to give
Since learning about Nicholas’ passion for drawing, SCH has been brainstorming for ways to help Nicholas turn his artwork into merchandise for sale.
During a conversation with a volunteer who is passionate about helping Nicholas, a similar topic surfaced.
“This was a confirmation of the SCH care team’s idea for a collaborative project. The conversation gave us the final push,” said Moses.
“We hope that this project will give Nicholas financial independence as he transits into adulthood.”
“We hope that this project will give Nicholas a sense of dignity and financial independence, as he transits into adulthood,” said Moses, who is spearheading the project.
It is SCH’s first attempt to raise funds through the sale of merchandise; 30% of the proceeds will go to Nicholas who can use it to pay his bills at the home and/or support his family.
Since March 2024, Nicholas has been working on an illustration for the first product which is set to be launched in the first quarter of 2025. Nicholas is now halfway to completing it.
Nicholas drawing with his tablet which enables him to sketch with less effort. It was one of the first things he bought with his own money on his 21st birthday and is a symbol of his independence.
“I kept getting sick and have not been able to finish the work,” said Nicholas, who attended a three-month graphic design course in early 2024, and now goes for practice sessions at an adult learning institution.
Nicholas hopes that his work can encourage others with disabilities to discover their gifts and potential to give.
However, as DMD progresses, Nicholas is gradually losing muscle strength in his hands and feels easily tired when he draws.
When asked how he copes, Nicholas replied calmly: “I slowly take my time.”
He takes a break every 15 minutes.
“Sometimes I just continue even though I am tired. It is one of the few things I like to do,” said Nicholas, who hopes to make the most out of each moment while he is still able to do what he likes.
Nonetheless, he is unfazed and steadily returns to drawing whenever he feels better, motivated by his passion for art and his desire to make a positive contribution to the home.
Nicholas, working on his project with SCH. He uses traditional paper and pencil to draw as he is still learning to master the technique of sketching with the tablet.
Empowered by this opportunity to contribute, Nicholas hopes that his work can encourage others with disabilities to discover their gifts and potential to give.
Nicholas, 21, is the oldest person in his ward. He teaches the younger ones to play Nintendo switch games. Photo courtesy of Singapore Christian Home.
“Don’t focus on something you cannot do, but do something you can do,” Nicholas said, quoting Nick Vujicic – the Australian-American motivational speaker and evangelist who grew up without arms and legs – who has inspired millions around the world.
About Singapore Christian Home
Singapore Christian Home (SCH) is a 240-bed nursing home that has been serving chronically ill patients from all races, religions and social economic status since 1960. Known for accepting difficult and challenging cases that are generally refused by other institutions, SCH is also the only nursing home in Singapore with a dedicated ward for medically-fragile children and young persons.
Click here if you would like to find out more, donate or volunteer with SCH.
Or give here towards the care of Nicholas and other SCH residents with Duchenne Muscular Dystrophy.
Singapore Christian Home is an Institution of a Public Character (IPC). All qualifying donations (above $20) are eligible for a 250% tax deduction.
Meanwhile, watch this space for details of Nicholas’ project with SCH.
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