KUALA LUMPUR: For nearly two decades, Siti Hawa Apandi’s mother was never far from her side. Zaidah Tamjis became what her daughter describes as her “hands and feet” through years of study at Universiti Malaysia Pahang Al-Sultan Abdullah (UMPSA).
That journey eventually took Siti Hawa, 37, from a diplomato a PhD, earning her recognition from the Malaysia Book of Records as the first person with spinal muscular atrophy to complete continuous higher education studies at a single university.
Siti Hawa, who was born in Batu Pahat, Johor and grew up in Kuantan, said she and her eldest brother both experienced mobility problems from childhood. She could not walk at age two and a half, and her family had no idea why.
The answer came only after her brother underwent a muscle biopsy following an appendicitis operation. Both were eventually found to have spinal muscular atrophy (SMA), an inherited condition that affects motor nerve cells and causes progressive muscle weakness.
Siti Hawa’s condition worsened as she grew older, and by secondary school she needed a wheelchair. Money was tight, and for a time she had to share one with her brother.
Sadly, her brother later died at 17 from complications related to the disease.
Nevertheless, her parents were determined that Siti Hawa receive the best education possible. “Every morning, my father would take me to school, carry me into the classroom and then leave for work,” she recalled.
He would return to pick her up before heading back to the office - a memory that has stayed with her.
“I did not want to let my father’s sacrifices go to waste, so I would complete my homework as soon as I got home. I also enjoyed reading additional books and would even ask my parents to buy the same textbooks used by my teachers so that I could study harder," she added.
Siti Hawa's efforts paid off when she performed strongly in the 2006 SPM examination and was listed among the country’s top-performing candidates with disabilities.
But she was unsure what to study next, until a teacher suggested a computer-related field that would require less physical exertion. She was offered a diploma in computer science at UMPSA in 2007.
Campus life brought new challenges: some laboratories and classrooms were difficult to reach by wheelchair, and classmates would sometimes carry both her and the chair upstairs.
“I was grateful to have friends who were always willing to help,” she said. “Sometimes, as many as four of them would help.”
Others lent her laptops or accompanied her to laboratories so she could complete assignments. Siti Hawa graduated with first-class honours in 2010, and her final-year project won first place in a university competition.
She continued with a bachelor’s degree in software Engineering, followed by a master’s and eventually a PhD in artificial intelligence.
Mum was always by her side
Through all those years, her mum Zaidah, 64, remained her closest source of practical support.
“My husband and I decided that this was the best way to ensure Siti Hawa could pursue her ambitions,” Zaidah recalled. “I stayed with her in the hostel, while my husband took care of the children at home.”
Zaidah helped her daughter bathe, dress and eat, accompanied her to lectures, and even copied down anything she might miss. “This was my routine for years, and I never once regretted it.”
She also accompanied Siti Hawa into examination halls, helping to turn pages and point out the questions she needed to answer.
“But there was one thing Siti Hawa did entirely on her own - answering the questions,” Zaidah added with a smile, revealing that Siti Hawa never needed to use the extra examination time available to students with disabilities.
Siti Hawa submitted her PhD thesis in May last year and successfully defended it four months later. By then, SMA had begun affecting her vocal cords, makin this step of the process particularly demanding.
The following month, she suffered serious respiratory complications and was admitted to intensive care, eventually becoming fully dependent on a ventilator.
Her condition meant she could not attend her university convocation last November. Her parents collected her PhD certificate on her behalf, and the university later held a smaller ceremony at her home in Kuantan, where she also received her MBR recognition.
Siti Hawa’s years at UMPSA also coincided with wider improvements in accessibility on campus, from ramps and lifts to wheelchair-friendly walkways and mobility vans. But her own story shows how much individual support still mattered, especially during the earlier years when facilities were more limited.
Despite now being bedridden, she has not stopped thinking about what comes next. “I hope to develop more projects that benefit society, especially by making technology easier to use for persons with disabilities like myself,” she said.