Living with Spinal Muscular Athrophy
No one navigates life without challenges, and for some, those challenges are rooted in genetic conditions that can deeply impact their well-being and everyday routines. One such person is Ainaa Farhanah binti Amali, a Malaysian artist living with Spinal Muscular Atrophy.
Though her condition is progressive, it doesn’t stop her from embracing life. This is her story of how living with a rare condition teaches her about self-acceptance.
A progressive disease that affects the muscles over time
29-year-old Ainaa was born with Spinal Muscular Atrophy (SMA), a progressive disease that weakens the muscles over time. She was diagnosed at just two and a half years old, at a time when awareness of SMA wasn’t as widespread as it is today. During her formative years, she realised that her body was changing in ways she couldn’t control.
“As a child, I could walk, but it was more like waddling, like a penguin.” She was able to walk until Standard 3 or 4, before transitioning to a wheelchair.
Image credit: @contengbyainaa via Instagram
By the time she was nine years old, Ainaa was well aware that she couldn’t permanently walk at all and had slowly begun to accept this new way of living. And while many people might struggle with this, for Ainaa, it became the beginning of her journey to find strength in acceptance.
When asked about how it felt knowing that she will not be able to walk for the rest of her life, Ainaa told TheSmartLocal Malaysia that for her, acceptance didn’t mean giving up – it meant acknowledging her condition and learning to live with it.
Her presence was viewed as a disruption to the classroom
Growing up in Kota Damansara, Ainaa spent a brief three months of her primary years at an all-girls school. “Unfortunately, the reactions from some teachers [at the school] regarding my presence disrupted the class and led my parents to withdraw me from the school,” she shared. She later transferred to another school in Petaling Jaya, where her peers were more supportive of her. However, some teachers there would question her enrolment and her parents’ decision not to place her in a special education school.
Medical professionals later confirmed she was mentally fit for mainstream education.
Her high school years at SMK Tropicana were different. She was the only Malay girl in her class and despite the cultural differences, she felt supported by her peers. “They carried me when needed, never treating me differently because of my condition,” she added.
Having access to information on SMA is essential, and the same was true for Ainaa. In her search to learn more about this rare genetic disorder, she came across SMA Care, a non-government organisation dedicated to supporting those with similar struggles. “This community have been a strong support system, as well as my family and friends who have been incredibly supportive,” Ainaa shared.
Image credit: @contengbyainaa via Instagram
Her parents, in particular, have gone the extra mile to create a home that caters to her needs. For example, the switches in her house have been adjusted so she can reach them, providing greater accessibility, along with a ramp that allows her to move around freely.
But life isn’t always a bed of roses, even with the support of those around her. There are tough days, when she feels fatigued or overwhelmed, which are common symptoms for those living with SMA. To cope with her condition, taking rest when needed and going for physiotherapy to manage the physical aspects have been helpful.
“When I feel down, I lean on my friends – without them, I wouldn’t have the courage to keep going,” Ainaa shared.
True to what a friend means, some of hers have stayed in contact since high school and have stood by her through thick and thin. They share a strong bond, with a promise to catch up each year and celebrate their birthdays together. “Even as an adult, I know how important it is to have a solid inner circle of people you can trust”, said Ainaa.
The journey to becoming an artist
When asked about her journey in the arts, Ainaa shared that she had known from a young age that she was passionate about it. “My art teacher Puan Lim Bee Ting in high school helped me discover my talent and encouraged me to explore it further,” she said.
Even though many people, including her relatives, questioned her decision to pursue a career in art, she didn’t let their doubts stop her. She recalled, “One relative even suggested I pursue computer science due to its demand, but I knew in my heart that art was where I belonged,” added Ainaa.
Image credit: @contengbyainaa via Instagram
To follow her passion for the arts, Ainaa pursued a Diploma in Interactive Design at KBU International College, followed by a degree in Graphic Design at First City University College (FCUC), in partnership with the UK’s Nottingham Trent University.
Her university years came with their own set of challenges. She shared that it wasn’t easy to enroll in higher education, especially at a government university, due to her condition and the need for more accessibility for those who rely on the use of a wheelchair. Challenges such as needing assistance and having someone help with accessibility to attend classes were often struggles.
Nonetheless, during her studies, her course-mates were incredibly helpful.
Some of Ainaa’s most meaningful artworks, like the SMA Series, which reflects the brain, spine, and lungs, were created from her personal experience with SMA.
Image credit: @contengbyainaa via Instagram
Upon graduation, Ainaa realised that traditional office jobs wouldn’t work for her, so she decided to create her own brand, contengbyainaa. What started as a university assignment soon evolved into her life’s work, becoming her true purpose. In the early years of her painting journey, she used traditional paintbrushes, but as her SMA progressed, she found it increasingly difficult to hold them for extended periods.
“My hands would tremble, and I’d experience numbness,” said Ainaa. As an alternative, she switched to using a palette knife, which is lighter and easier to handle. She also uses a standing frame or tilt table, as she can only paint for about 30 minutes before the pain sets in. Ainaa loves mixing textures using materials like quilling paper, miniature elements, and scrapbooking, which help create depth and meaning in her work. Her inspiration is often drawn from the landscapes around her and her love for nature.
To expand her creative pursuits, she has also collaborated with friends in other creative fields. For example, a close friend, Najwa, who is a baker, teamed up with her to create Raya hampers. Though it was a small project, it brought immense joy to both of them and to the people who bought the hampers. “It’s these little successes that keep me going and remind me that everything I do, no matter how small, is worth celebrating,” added Ainaa.
Image credit: @contengbyainaa via Instagram
In 2024, she was shortlisted for the Women of the Future Southeast Asia Award in Singapore, which recognised the hard work she’s put into her art and brand. Through all of this, Ainaa learned a crucial lesson: “We need to accept ourselves, as we are, flaws and all”. For her, it’s about learning to embrace who you are and finding ways to live a full life despite the struggles.
And in the end, it’s kindness – kindness to yourself and others. A smile, a simple gesture of love, can bring so much positivity into the world. And that makes all the difference.
Embracing and living life with Spinal Muscular Atrophy
Living with SMA can be a journey filled with its own set of challenges, but if there’s anything we can learn from Ainaa’s story, it’s that self-acceptance can be the foundation of any personal life journey.
By embracing who she is, Ainaa has been able to push through the toughest days and keep doing what she loves. And that is the message she continues to share: “Accept yourself, pursue what makes you happy, and don’t let anything hold you back.”
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Cover image adapted from: @contengbyainaa via Instagram
Some quotes have been edited for brevity and clarity.
TheSmartLocal Malaysia would like to thank Ainaa for taking the time during the fasting month to make this interview possible.