Mother Becomes Siti Hawa's 'Hands And Feets' In PHD Journey

Dr Siti Hawa Apandi has made history after being recognised by the Malaysia Book of Records (MBOR) as the ‘First SMA Patient to Complete Continuous Higher Education Studies from Single University’.

The 37-year-old, who lives with the rare genetic condition spinal muscular atrophy (SMA), began her academic journey at diploma level and went on to complete her Doctor of Philosophy (PhD), the highest academic qualification, at Universiti Malaysia Pahang Al-Sultan Abdullah (UMPSA).

The unwavering support of her family, particularly her mother, who accompanied her throughout her studies at UMPSA from 2007 until this year, was instrumental in helping Siti Hawa prove that her genetic condition would not prevent her from pursuing her ambitions.

SMA is an inherited disease that damages motor nerve cells in the spinal cord and brainstem, disrupting the signals sent to muscles and causing progressive muscle weakness and wasting. This can affect basic movements such as walking and swallowing, while severe cases may also impair the muscles responsible for breathing.

Recognised as a rare disease by the Ministry of Health, SMA is estimated to occur in one in every 10,000 to 20,000 live births in Malaysia, according to SMA Malaysia. Data from the Malaysian Institute for Medical Research also indicate that between 20 and 30 new cases are detected annually.

However, Malaysia does not yet have a comprehensive national database on SMA.

PERSEVERANCE AGAINST ALL ODDS

Speaking to Bernama, Siti Hawa, who was born in Batu Pahat, Johor, but grew up and lives in Kuantan, Pahang, said she and her eldest brother had experienced mobility difficulties since childhood.

 “By the age of two and a half, I still could not walk. My eldest brother, who was seven at the time, experienced similar difficulties. Our family did not know what was wrong with us and had no knowledge of SMA.

In a heart-warming gesture, UMPSA organised a mini-convocation at her home in Kuantan on Aug 6, in addition to presenting her with recognition from the Malaysia Book Of Records (MBOR). All pix credit UMPSA.

“Everything changed after my brother underwent a muscle biopsy following an appendicitis operation. That was when our family finally found out,” said Siti Hawa, the third of five siblings, adding that her other three siblings did not have SMA.

 Despite her mobility challenges, her parents made sure she continued attending school.

“Every morning, my father, Apandi A. Hadi, would take me to school, carry me into the classroom and then leave for work,” said Siti Hawa, who attended Sekolah Rendah Kebangsaan Pangkalan Tentera Kuantan from 1996 to 2001.

Her father, who worked in the private sector, would return to school to pick her up and take her home before heading back to the office.

“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 from school before doing anything else.

“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 said.

Her muscle strength deteriorated further when she entered secondary school, forcing her to use a wheelchair. Due to the family's financial constraints, she had to share the wheelchair with her brother.  He died at the age of 17 due to complications arising from SMA.

Despite these difficulties, Siti Hawa remained determined to pursue her education. Her perseverance paid off when she achieved excellent results in the 2006 Sijil Pelajaran Malaysia (SPM) examination and was listed among the country's top-performing candidates with disabilities.

SUPPORT FROM TEACHERS AND FRIENDS

After completing her SPM, Siti Hawa was uncertain about her next step until one of her teachers suggested that she pursue computer-related studies, a field that would require less physical exertion.

“The teacher even helped me fill in the UPU (University Central Unit) application form because we did not have a computer or Internet access at home. To my surprise, I was offered a Diploma in Computer Science at UMPSA in 2007,” she said.

Life on campus was challenging, not only academically but also in terms of mobility.

“I was grateful to have friends who were always willing to help. Some classrooms and laboratories were on upper floors and difficult to access in a wheelchair. My classmates would work together to carry me and my wheelchair upstairs. Sometimes, as many as four of them would help,” she said.

Their kindness extended beyond physical assistance. Given her family's financial constraints, some friends lent her a laptop, while others accompanied her to the laboratories to help with assignments.

“They always took my circumstances into consideration when planning activities so that I could participate as well,” she said.

In 2010, Siti Hawa graduated with first-class honours. Her final-year project, titled ‘Online Registration System of Persons With Disability Card’, also won first place in a university competition.

She subsequently pursued a Bachelor's degree in Software Engineering from 2010 to 2013. One of her projects, the ‘Smart Attendance Management System’, went on to win gold medals at several university-level, national and international innovation competitions.

REACHING THE HIGHEST ACADEMIC MILESTONE

Siti Hawa continued her studies at master's level from 2013 to 2016 at UMPSA before being offered a place in the university's PhD programme in 2019.

“One of my lecturers offered me an opportunity to participate in research funded by a grant. My research focused on artificial intelligence (AI),” she said.

After years of hard work, she submitted her PhD thesis for examination in May 2025 and successfully defended it during her viva voce in September that year.

 “My viva voce presentation was extremely challenging because SMA had begun affecting my vocal cords, leaving me with a very weak voice,” she said.

A month later, Siti Hawa faced another major setback when SMA triggered serious respiratory complications. She was admitted to the intensive care unit at Hospital Tengku Ampuan Afzan in Kuantan and became fully dependent on a ventilator.

Her condition also prevented her from attending UMPSA's convocation ceremony in November 2025. Nevertheless, there was a moment of joy amid the ordeal when her parents received her PhD certificate on her behalf. She was also awarded the Abdullah Ummi Maktum Inclusive Excellence Award in the postgraduate category.

 In a further gesture of recognition, UMPSA organised a mini convocation ceremony at her home in Kuantan on Aug 6 this year, where she was presented with the MBOR award.

MOTHER BECOMES HER ‘HANDS AND FEET’

Behind Siti Hawa's achievements was a steadfast figure who remained by her side throughout her years at UMPSA — her 64-year-old mother, Zaidah Tamjis.

“My husband and I decided that this was the best way to ensure Siti Hawa could pursue her ambitions. I stayed with her in the hostel, while my husband took care of the children at home,” Zaidah told Bernama.

Dr Siti Hawa's mother, Zaida Tamjis, was among the individuals who remained by her side and fully-supported her throughout her studies at UMPSA.

Her daily responsibilities included helping her daughter bathe, get dressed and eat, as well as attending to other needs that required physical assistance. She also accompanied Siti Hawa to lectures.

“I had to copy all the notes, photograph the slides shown by lecturers and obtain any learning materials she might have missed. This was my routine for years, and I never once regretted it,” she said.

Zaidah even accompanied her daughter into examination halls.

“I helped turn the pages of the question papers and pointed out the sections she needed to answer. But there was one thing Siti Hawa did entirely on her own — answering the questions. She wrote the answers herself despite having weak wrist muscles.

“Moreover, she never took advantage of the additional time that students with disabilities are entitled to. She completed her papers within the same time limit as other students,” Zaidah said.

ENSURING NO POTENTIAL IS LEFT BEHIND

Siti Hawa's journey at UMPSA also illustrates how an institution can adapt to meet the needs of its students. When she first enrolled, disability-friendly infrastructure on campus was still limited.

The experience of classmates carrying her wheelchair to computer laboratories on upper floors became part of the university's journey towards developing a more structured and inclusive environment.

Today, UMPSA has established its Disability-Friendly and Inclusive Ecosystem Policy (DAMAi), implemented through the Centre for Inclusive Technology and Ecosystem (iNKLUSIF).

Dr Munira Abdul Razak.

Its director, Dr Munira Abdul Razak, said both the Pekan and Gambang campuses were now equipped with facilities such as ramps, accessible toilets, lifts with Braille buttons, designated parking spaces, wheelchair-friendly walkways and mobility vans fitted with hydraulic lifts.

Beyond basic physical infrastructure, the university has expanded its support through the Inclusive Technology and Ecosystem Hub (HATi), a community space for digital technology and assistive solutions. It is equipped with e-Braille technology, gamification stations, smart board sets and disability-friendly digital tools to support learning and skills development among the university community.

“We have also established the DAMAi@UMPSA Community-Based Rehabilitation Centre in collaboration with the Social Welfare Department. It focuses on rehabilitation programmes, early intervention and skills training for persons with disabilities from the wider community, allowing the university to apply its technological expertise to benefit society,” she said.

All these initiatives are guided by the principles of Universal Design, enabling members of the inclusive community to move around, learn and use facilities independently without having to rely on others, she added.

Munira said inclusive education was not merely about providing physical facilities, but also ensuring that students with disabilities could participate in learning, conduct research, take on leadership roles and contribute to society without compromising academic standards.

Siti Hawa's achievements are a testament to this approach. She was the first president of the DAMAi Club, which looks after the welfare of students with disabilities, and has participated in several international programmes.

Inclusive education is not merely about providing physical facilities; it is about ensuring take on leadership roles and contributes—all without compromising academic standards.

“She was directly involved in organising the International Carnival on Inclusive Technology and Ecosystem (iNCLUSIVE) at UMPSA's Pekan campus in 2025, which brought together global strategic partners for discussions on inclusive technology and ecosystems.

“This demonstrates how a student with a disability who is part of such an ecosystem can develop into a capable leader,” Munira said.

Despite being bedridden, Siti Hawa remains determined to continue expanding her knowledge, particularly in programming.

“I also hope to develop more projects that benefit society, especially by making technology easier to use for persons with disabilities like myself,” she  said.