Duchenne Muscular Dystrophy Survivor in Singapore: Shalom Lim

“The day one accepts one’s end is the day one also starts to live.” 

Those were my closing words in a video published by The Straits Times in August 2020. 

While most healthcare recipients in Singapore are the elderly, I’m sandwiched between the millennial (Gen Y) and Gen Z generations as I was born in October 1995. 

Unlike most young people in Singapore, I was born with a fatal neurological disorder and am completely dependent on my personal aides, better known colloquially as my caregivers (my parents and our foreign domestic workers (FDWs) past and present). 

My caregivers play a huge part in my life, as they help me to perform activities of daily living (ADLs) from ‘cradle to grave’. If not for my faithful and loving caregivers, I would not be here authoring this piece.

Shalom with caregiver Glenda, who supports him for his healthcare needs 

As a three-month-old infant, doctors assumed that I wouldn’t live to experience much of life in its full manifestation and glory. But here I am today, a 26-year-old award-winning artist, philanthropist, and terminal illness survivor!

Introducing Shalom – Homage’s freelance columnist and a Duchenne muscular dystrophy survivor

Shalom with his mother, Mrs Lim at the art museum

Hi everyone, my name is Shalom and I’m currently engaged as a freelance columnist for Homage and Muscular Dystrophy News.

Through this column, I hope to offer fresh and unique insights into the niche medical field as an insider expert on rare neurological illnesses such as Duchenne muscular dystrophy (DMD).   

What is Duchenne muscular dystrophy (DMD)? 

According to official data, DMD affects about one in 3,500 males and one in 50 million females.  The reason for the vast gender disparity in terms of affected cases is because DMD is an X-linked inherited disorder. Despite its recognition by the World Health Organisation (WHO) as a rare disease, it is one of the most common neuromuscular conditions and is the highest genetic killer of children worldwide. 

The average life expectancy of a person living with Duchenne currently stands at 26 years old based on clinical research. It is one of nine types of muscular dystrophy (MD), a rare group of genetic disorders that affects the function of the brain and the muscles in the body. 

For persons with MD, our bodies lack a chemical hormone or protein known as dystrophin produced in the brain that is responsible for keeping our muscle cells intact and holding its components together, thus preventing them from breaking apart and disintegrating from the time when we are born, resulting in muscle degeneration and death over time for Duchenne patients. 

As an inherited condition that primarily affects males, those with DMD usually experience progressive muscle weakness, which would lead to a loss of mobility functions that affects day to day living. Female Duchenne survivors are also known as ‘manifesting carriers’ because they will also pass on the Duchenne gene to their children. 

A history of DMD in the family 

I had two uncles on my mom’s side who were born with Duchenne. Unfortunately, I never had the privilege of getting to know them personally because one of them, uncle Philip, passed away at the age of 16 due to breathing difficulties caused by pneumonia, and his older brother lost his life a little under two years later, through very similar circumstances. They departed this world a good quarter of a century before I entered it.

My grandmother only had one live-in helper to assist her with caring for her boys when they were still around, so my mother and my third uncle, Charles, would have to help out in the household from a young age. 

Shalom and his family at a birthday celebration 

When my uncle Philip was about 14, my grandmother experienced caregiver burnout and briefly placed him in a care facility for two months.

At the care facility, my uncle cried every day because the staff asked him to brush his own teeth, even when he could no longer do so by then. Family members were only allowed to visit him once a week, and it broke my grandmother’s heart to witness his agony and misery each time she visited him at the care facility. Eventually, she couldn’t take it any longer and applied for his discharge and brought him home immediately, much to the family’s collective joy and relief. Thereafter, she swore never to separate my uncle from herself again and she was the only one by his side at the hospital as he breathed his last a couple of years later.

There is something so intimately inextricable about the bond between a mother and her dying child that even death itself can never break. 

Growing up with DMD

50 years later, it was my mother’s turn to see her first son, Isaac, that she had carried in her womb for nine months lie lifelessly cold on his bed. 

Both my brother and I were diagnosed with Duchenne muscular dystrophy. Life has never been the same for us ever since. 

Shalom (right) with his older brother Isaac (left)

If there’s one thing I love the most about my mom, is that she never once lacked the energy to openly embrace our visible differences and showcase us to the world. 

She was never shy nor ashamed of my brother and I. In fact, she proudly brought us everywhere when we were little – from horse-riding and sailing to swimming, and worked with various disability-centred social service agencies to come up with new and fun experiences for us.

I would be willing to give up everything I have now including my awards and certificates to relive those priceless childhood memories with my family. Mother, thank you for teaching me the true meaning of love, not as the world defines it, but for what it ought to be. Heaven is in our lives.

Coping with physical and emotional challenges 

About a third of patients have been diagnosed to have neurodevelopment comorbidities such as attention deficit hyperactivity disorder (ADHD), anxiety disorder, intellectual disability, language and learning challenges, and autism spectrum disorder (ASD). 

As a side note, my late older brother, Isaac, was diagnosed with autism at four years old in 1996, a few months after I was born. We’ve been through so much together, and he was perhaps the closest person to me. 

Isaac passed on in December 2019. He was an amazing brother to me, and an immensely talented artist. He painted some of the most beautiful art pieces, and we display them proudly in our home to this date. 

As for myself, I am considering getting assessed for ADHD due to lifelong struggles with a lack of attention and focus as well as execution dysfunction. 

It is my personal assertion as a person living with MD that the majority of neurodivergent conditions in Duchenne survivors remain undetected and subsequently undiagnosed and untreated by early intervention professionals because of the priority for clinical practice to preserve muscle function and survival as long as possible. 

Living life to the fullest with DMD 

In July 2021, I graduated from the University of Liverpool (UOL) with a Bachelor’s Degree (Hons) in Criminology and Security. It had always been a dream of mine to study at a distinguished British university, having fallen in love with English football at the age of six and growing up supporting Liverpool as a child (even though I’ve since switched allegiances to Chelsea).

However, I didn’t think that it would have been practical to study in the UK, given my Duchenne-related health challenges which would have made it very costly and difficult for my parents to send me abroad. 

Nevertheless, that wish came true when the Ministry of Home Affairs worked with my alma mater, Temasek Polytechnic (TP), as well as the Singapore Institute of Technology (SIT), and UOL to launch a critical criminology degree programme near my home off the banks of Bedok Reservoir. As I received the Dean’s Award presented by the former Dean of the School of Law and Social Justice, Debra Morris, in front of the stage at the main auditorium at the [email protected] campus, I felt immensely proud of my academic achievements and grateful to my family and the SIT-UOL team for helping me make this dream a reality. 

Shalom and his parents at his University graduation

I could not have done this without the faithful love and support of the two most important women in my life – my mother who has supported my emotional well-being and special educational needs (SEN) since I started school, and Glenda, our FDW who has partnered with me to care for my physical health for the last 16 years.

Coincidentally, my University graduation was exactly seven years on from the day when I proudly collected my Diploma in Business with Merit certificate awarded by Temasek Polytechnic at the Temasek Convention Centre on Thursday, 21 May 2015. Exactly seven years prior to that, I successfully underwent major spinal fusion surgery to correct my scoliosis (curvature of the spine) caused by the progression of Duchenne which could be life-threatening if left untreated on its own. Amidst the celebratory euphoria of the day, something didn’t feel right. I really wished Isaac had been there to witness my big day. Brother, thank you for showing me what it means to laugh, lift, and love. I miss you every day.

Closing thoughts 

I would like to take this opportunity to place on record my personal and heartfelt thanks to Homage’s CEO and Founder, Gillian Tee, for believing in me in spite of my obvious physical limitations and offering me this once-in-a-lifetime privilege to share my healthcare story for her start-up, Homage. She has touched me with her love for her mother and her dedication towards supporting the welfare and well-being of our seniors from the Pioneer and Merdeka Generations who have sacrificed their lives in service of the nation. 

She has not only inspired me to take care of my parents in their golden years but also moved me to find a para-national non-profit organisation that aims to provide the medical and psychosocial needs of individuals and families affected by MD in the Asia-Pacific region, especially in ASEAN.

In the local context, the organisation hopes to add value to and supplement the amazing work of the Muscular Dystrophy Association of Singapore – not to duplicate what they’re already doing, but to work in tandem with their existing programme and service structures. 

In the meantime, stay tuned for more original and unique content coming your way!