In July 2024, KIMSHEALTH in Thiruvananthapuram saw an unusual medical board meeting, as unusual as the case it was held for. “Before any complex surgery, we hold a medical board meeting where all specialists involved in the treatment, along with the administrative team, come together to review the case,” says Dr Ranjith Unnikrishnan, consultant orthopaedics spine surgeon at KIMSHEALTH. “We discuss the pros and cons, outline anticipated risks, propose solutions and ensure the family fully understands the situation before obtaining their consent for surgery.”
Typically, patients do not attend these meetings, with their family or caregivers representing them, says Unnikrishnan. But, in the case of Maldivian disability activist Mohamed Raishan Ahmed's surgery, Unnikrishnan insisted that the 23-year-old be present.
Raishan’s condition stemmed from scoliosis caused by Spinal Muscular Atrophy (SMA) from birth, presenting several challenges. “SMA-related scoliosis is particularly complex,” explains Unnikrishnan. “First, most patients with SMA don’t survive this long due to the condition’s severity. Those who do face significant limitations―it doesn’t affect the brain but severely impacts the locomotor system, leaving them unable to sit, stand or walk.”
In Raishan’s case, his hips were dislocated from childhood, and he had spent his entire life seated. Sitting upright was his primary functional need, but as his neuromuscular scoliosis progressed, it became increasingly difficult to manage with braces. The curvature of his spine had advanced to the point where braces could no longer hold him upright. Moreover, the braces caused pain and complications that made it impossible for him to sit without falling forward.
The only solution was surgery, but this was fraught with risks. “The surgery required stabilising his entire spine from the head to the hip―a highly complex and lengthy procedure, even for a typical patient,” says Unnikrishnan. “With SMA, there were added challenges, including anaesthetic risks and extreme rigidity in his spine. Aligning his spine would require breaking it at multiple points, making it extraordinarily demanding.”
Unnikrishnan, therefore, insisted on Raishan’s presence at the medical board meeting that would discuss these risks, including the possibility of death. “In this case, I felt it was essential for the patient to be present,” he says. “Because Raishan was the decision-maker in his family―intelligent, well-informed and fully capable of understanding the intricacies of the surgery.” Raishan’s strong personality became the biggest fuel for the doctors at KIMSHEALTH to proceed with the surgery.
When Raishan visited Unnikrishnan four months after the surgery, the doctor asked him why he had chosen to proceed, despite the risks. “I told him repeatedly that he could die,” recalls Unnikrishnan. Raishan’s response left the doctor deeply moved. “Doctor,” he said, “I knew you were always honest with me. But I was ready to die. Living with SMA Type 2, I had already accomplished more than I ever imagined. My family understood my decision, and I didn’t want to spend the rest of my life unable to sit upright.”
The genius on wheels
Initially, Raishan, like any other person with disability, did not see himself different from others. “At first, I didn’t really notice anything unusual about myself,” recalls Raishan, speaking to THE WEEK over a video call. “As a little child, I was preoccupied with my own life―what I would see, what I would do. I didn’t realise I was a disabled person.”
However, his mother Aminat Ibrahim did notice. Around three to four months after Raishan was born, she observed that he wasn’t crawling or making the typical movements that other babies do. Concerned, she consulted local Maldivian doctors, but they couldn’t identify what was wrong. They recommended that the family go to Thiruvananthapuram to consult with paediatric neurologist Dr P.A. Muhammad Kunju.
“Since I was six months old, I have been under Dr Kunju’s care,” says Raishan, his voice still recovering from a tracheostomy, a surgical procedure that makes a hole in the neck to insert a tube in the wind-pipe for easier breathing. “At that time, he suggested a muscle biopsy, which confirmed the diagnosis of SMA type 2. Following the diagnosis, he recommended regular checkups, initially every six months. However, frequent visits were difficult for us due to financial constraints and the absence of government sponsorships or insurance support back then. So, we requested annual checkups during school holidays.”
Aminat recalls the moment the doctor explained that Raishan, due to SMA type 2, would never be able to stand and could only sit. “I cried a lot,” she admits. “But then I resolved to make Raishan someone society would accept, proving that even individuals like him can achieve extraordinary things.” Aminat says that even as a toddler, Raishan excelled in memory, speaking and intellect compared to other children of his age.
“So she decided to give me an academic edge by introducing higher grade books,” says Raishan. “For instance, when I was in kindergarten, she provided first-grade-level books in subjects like Math and English to keep me one step ahead.”
Aminat also insisted on enrolling Raishan in a mainstream school, despite it being “incredibly challenging due to the stigma surrounding children with disabilities”. She says children with disabilities were then segregated into separate curriculum focused on basic life skills. “These classes grouped children with various disabilities together, regardless of their individual needs, and provided a one-size-fits-all approach to education. I strongly oppose this kind of teaching,” says Aminat. “Moreover, society held a collective belief that people with disabilities should remain confined to their homes and not mingle with others. This stigma not only marginalised those with disabilities but also publicly shamed them, even when they attempted to seek education or employment. People would often say things like, ‘There is no point in making him study; he is disabled. How can he progress in the future?’ But I refused to give up.”
During his kindergarten years, Raishan’s parents went to great lengths to ensure he could actively participate in all activities. They arranged a plastic chair for him in the classroom and carried him to school every day, seating him alongside classmates.
“The teachers were very supportive,” recalls Raishan. “They would move my chair around for different activities, like outdoor walks or sports. Sometimes, they even lifted me on to the monkey bars.” He adds with a smile, “I remember one time, as they were helping me on to the monkey bars, another child asked why I was getting special treatment.”
When Raishan moved to the lower primary section, his parents customised a chair by welding together a baby stroller and a baby dining chair. “This chair allowed me to sit and move around comfortably. It stayed in the classrooms with me, and as the classroom locations changed every year, the chair followed me throughout my schooling,” he says.
Attending a regular school, Raishan says he rarely felt different, except during certain occasions like report card distribution or award ceremonies. “While other students went up on stage, I stayed put, and the principal would come down to present my medal. This continued until grade 10,” he says.
His classmates were supportive throughout his school years. “Due to my condition, I couldn’t move my hands freely, so my teachers and classmates stepped in to assist me,” says Raishan. “They would take out my books or pen, place the pen in my hand, and position the book within reach so I could write and participate like any other student.” However, writing presented its own challenges. “Because of my limited hand strength, I couldn’t press hard on the pen, which made my handwriting difficult to read at first. Over time though, my teachers got used to it,” he says.
Raishan’s father was actively involved with the Badminton Association of Maldives. He was a player, trainer and coach back then. His mother was in the youth ministry. His elder brother Rishwan Shiyam, 28, was a national badminton player and a coach; he is now a businessman.
The family used to live in Male until 2021, post which they moved to Hulhumale Phase II, a settlement on a reclaimed island nearly 8km from Male. “We had to move homes multiple times because it was challenging for my parents to transport me,” says Raishan. “We would rent houses near schools to make it easier for my parents to carry me back and forth. This continued until I got a motorised wheelchair in the sixth grade.”
Leader and gamer
Leadership came naturally to Raishan. In school, he progressed from being a class prefect to becoming a house captain. He was the joint secretary of the English Literary Association in grade 11 and the coordinator in grade 12. Throughout his school years, he excelled academically, ranking among the top five students from grades 1 to 10. He also secured a spot in the national top 10 rankings, both during his 10th grade and 12th grade.
However, his health continued to deteriorate with each passing year. “When I was in kindergarten, I used to be able to move my hands up and down, left and right. For example, I could hold a packet of Tropicana, take out the straw, insert it into the packet, and drink the juice on my own,” says Raishan. “I could also sometimes hold a spoon, scoop food and eat it independently. However, over time, I lost these abilities.”
Raishan also noticed his eyesight weakening and began wearing glasses at the age of 10. “Scoliosis has also been a major issue,” he says. “I first noticed it when I was about seven or eight. At first, it didn’t seem serious because my spine looked straight, but over time, the curvature worsened. By 15, I had to start wearing braces.”
Until recently, says Raishan, there had not been much consciousness in his country on issues of accessibility for people with disability. He finds Indian cities like Thiruvananthapuram, Chennai and Bengaluru―places where he usually goes for checkups―much better. Even in his schools―Kalaafaanu School and Center for Higher Secondary Education―there were no ramps leading up to the stage. “We had to personally request the school management or higher-ups to build a ramp,” he says. “Sometimes, they would take it seriously and prioritise it, but at other times, we were told that it was not possible.’”
Raishan recalls how when he wished to join Kalaafaanu school, he was told that it was not the “Imaduddin School or Jamaluddin school”―two schools in Male that have programmes for students with special needs. “I feel that the people making such comments simply don’t understand my capabilities,” says Raishan, undeterred. “One of the individuals who made such a comment was a former principal of the school I graduated from. Despite those comments, I managed to graduate as one of the top students from that very school; it felt like sweet revenge.”
It was in this context of the general insensitivity of those in power positions that Raishan became an advocate for the rights of people with disabilities and also cofounded the Maldives Association of Persons with Disabilities (MAPD). He was just 12 then. MAPD initiated a series of projects, the most notable being the Learn and Earn project. “It was a series of workshops,” he says. “In each workshop, we would get a venue, invite instructors from various fields, and bring together people with disabilities, including children, senior citizens, their parents and guardians, and we would teach them different skills. For example, we taught things like origami―making swans, baskets and other designs out of paper. We also had activities within the series, such as making art with pastry, creating flowers from foam paper and making flowers using stockings. We focused on hands-on activities that allowed people to explore their creativity and learn practical skills.” Raishan’s work earned global notice in 2016 when he was nominated for the International Children’s Peace Prize.
After class 12, Raishan decided to pursue psychology. A local mentor told him that he had a strong voice and good communication skills, which could be useful in many fields. “After doing some research, I found myself drawn to psychology,” he says. After graduation, he had planned to go to the United Kingdom for higher studies, but the pandemic turned him into a homebody. Raishan, who was into video games, started being active in game circles. “I am proud to say that I became one of the top in-game leaders globally in PUBG,” he says, adding that he won multiple tournaments. And, it was during one tournament when he was in India for a checkup that he earned the nickname ‘NagluBaglu’―a name coined by a Bangladeshi gaming streamer.
However, the Covid-induced break and excessive time spent playing PUBG had their downsides. “My handwriting became increasingly difficult to manage,” says Raishan. “On my first day at university in 2021, I noticed a significant change. While my handwriting was normal in the 12th grade, by 2022, I could no longer write quickly. I had stopped practising handwriting and spent more time playing PUBG instead. Eventually, I switched to typing on my phone during lectures.”
In 2022, Raishan transitioned to mobile gaming as well, after finding it increasingly difficult to move his right hand. “My right hand was primarily used for controlling the mouse, while my left hand managed the W-A-S-D keys. As using my right hand became more challenging and my reaction time slowed, I switched to mobile gaming,” he says. He also reflects on losing touch with the global players he regularly interacted with while playing the multiplayer game Dota.
All that gaming did not distract him from studies―he came second in the university rankings, missing the top spot by just 0.04 points.
Death can wait
In 2022, at the age of 21, Raishan started developing skin sores caused by the pressure and friction from his braces. He consulted Kunju, who referred him to Unnikrishnan for further treatment. Unnikrishnan realised that to stabilise his spine, he had to fix it from the head to the pelvis, encompassing the cervical, thoracic and lumbar vertebrae as well as the pelvis.
Unnikrishnan says that aligning Raishan’s spine was a significant challenge because it required breaking the spine at multiple points―a procedure known as osteotomy. This involved breaking the spinal column (not the cord) at several sites to achieve proper alignment and balance. “While performing the surgery, we had to ensure his spinal cord wasn’t damaged, as that could have resulted in him losing bladder and bowel control,” elaborates Unnikrishnan. “Apart from the surgical complexities, preserving his neurological function was critical. These factors made the procedure extremely challenging.”
The extraordinarily rare surgery took place in August 2024. “In my 30 years of experience, I have never performed a surgery at this level of complexity,” reveals Unnikrishnan. “Even in medical literature, such cases are undocumented. This is largely because patients with such severe conditions typically don’t survive long, or lack the willpower to undergo such a risky surgery. This case was unique because he was determined, and fortunately, everything turned out well.”
The core team for surgery included Unnikrsihnan, his two associates and scrub nurses, along with the anaesthetists. However, given the complexity of the procedure, around 40 or 50 people were directly or indirectly involved at various stages of the surgical procedure. The team meticulously planned for all potential complexities. Fortunately, far fewer complications arose than they had anticipated. “I was even prepared for an intraoperative cardiac arrest,” says Unnikrishnan.
“Throughout the procedure, he remained stable, and after the surgery, he was electively ventilated for two to three days,” says Unnikrishnan. “A tracheotomy was performed to reduce the risk of complications like pneumonia. Gradually, he recovered through rehabilitation, and we were able to remove the sutures. Nearly four months post surgery, he has achieved his goal of sitting upright without support or pain, which was his main goal.”
In this post-surgery phase, Raishan’s primary focus is on regaining his voice. He has also narrowed down the programmes and universities he intends to apply to for his postgraduation in psychology. “Beyond that, I have been actively collaborating with UNICEF Maldives and the UN Maldives,” he says. “Before the surgery, I had initiated a project with UNICEF Maldives called ‘In My Shoes’, but it had to be paused when I went in for surgery.”
The innovative concept behind the ‘In My Shoes’ project is to have a person in power―someone with the authority to create laws or drive social change―live alongside a person with disabilities for three days. “The idea is to give them first-hand experience of the challenges faced by individuals with disabilities, fostering empathy and understanding,” says Raishan. “This immersive experience is designed to inspire them to implement policies and changes that support the disability community, creating a more inclusive and equitable society.”
That is a desire we could all have and benefit from.