At the age of 26, Rachel Siew Suet Li may weigh only 19kg and stand at 90cm tall but she refuses to give up on life as she stares down her bullies and sends them running.
“I was born with a rare genetic disorder known as Morquio syndrome which affects me physically but not intellectually. I have weak fingers, wrists and wobbly joints, and I cannot hold anything heavier than my Samsung mobile,” said Siew in a candid interview.
Morquio syndrome is a rare genetic disease in which the body cannot break down sugar chains called glycosaminoglycans that help build bone, cartilage, eye cornea, skin and connective tissue. As a result, glycosaminoglycans collect in cells, blood and connective tissues and cause damage over time.
“My bones, joints, aortic valve, kidney, hearing and even eyesight are deteriorating over time as a result of my medical condition,” said Siew.
The law graduate shared some of the challenges she faced.
“My first corrective treatment started when I was three years old. I underwent cervical fusion. My C1–C3 bones were reinforced with bones removed from my skull. This is to prevent cord compression or neck fracture should I fall. It was a major procedure which was carried out by a neurosurgeon from the Royal Manchester Children’s Hospital in England. For eight months, I wore a halo ring brace to restrict head and neck movements after the neck fusion.
“I vividly remember an incident at a supermarket. I was placed in a trolley as mum was busy selecting grocery. A man and his young son came very close to scrutinise me as if I were an alien from outer space. I must have looked strange with that halo ring brace over my head. I had nowhere to hide and went teary.
“Mum turned and saw that happened. She walked right up to the duo. Taken aback, they quickly walked away without an apology. Mum was stone silent. She began pushing the trolley, following the father and son at every corner they turned. They quickly left the supermarket. They must have gotten the message: How do you like being stared at or followed? Not comfortable, right? Then don’t do that to others. What mum did gave me the courage to stand up to the world.”
Siew related another incident. “I learnt to turn negativity into something positive, early on in life. When I was in primary school, there was this boy who liked to tail me and mimicked the way I walked, while his friends laughed at me. One day, I turned around, looked him in the eyes and said: ‘You must be deeply in love with me to follow me everywhere.’
“The boy got the shock of his life; his friends laughed at him. I never saw the boy again.”
When she was 16, Siew underwent an osteotomy, a leg alignment surgery. Her knocked knees had overlapped, causing them to rub against each other when she walked, thus hindering movements. A titanium plate and screws were inserted into her leg. A year of physiotherapy followed before she could walk again.
“Of course, I miss doing the things that normal teenagers do: outings with friends, shopping, going to the movies. Mum is always there to encourage and motivate me. ‘If Stephen Hawking can be who he is, why can’t you be who you want to be?’ mum once said to me. She is indeed my strength and inspiration,” said Siew.
She has since learnt to accept her condition. She does not believe in self-pity. “Every challenge I overcome is a feather in my cap. I want to lead a purposeful life,” said the gutsy gal, who graduated with a Law degree from University of Hertfordshire, England, in 2011.
At her convocation, she was given a standing ovation. It was the culmination of a dream come true.
“When I attended mum’s MBA convocation years ago, she placed her mortar board on my head and said to me: ‘I looked forward to you placing your mortar board on my head’. It was now my turn to place the mortar board on mum’s head. No words could describe our feelings as we hugged each other.”
Siew found a job with an international property investment firm in Kuala Lumpur. However, less than three months into her new job, she had to undergo a second osteotomy at UMMC as her knocked knees had overlapped again. She is currently recovering from her surgery.
Siew has also started treatment for Morquio syndrome with a weekly dose of Enzyme Replacement Therapy (ERT) at Hospital Kuala Lumpur.
“After waiting for two decades for a cure, my prayers have been answered. Vimizim, a drug to replace the missing enzyme in Morquio syndrome, has been approved by the FDA and is now available in Malaysia. It will give me a chance to lead a more independent life, and enable me to do simple things like climbing the stairs and opening the door.”
However, Siew faces yet another hurdle. ERT is a life-long treatment and one 5mg vial costs RM4,000. Siew requires 400 vials a year, which works out to a staggering RM1.6mil a year, a sum which is beyond her family.
“The turning point in my life came when I enrolled at Brickfields Asia College for a UK Transfer Degree Programme (Law). BAC director Raja Singham and his wife took a personal interest in my situation, and went the extra mile to set up a trust fund to raise money for my medical treatment. I also thank God for parents who never gave up on me,” added Siew.
Beyond Barriers is a platform for sharing and raising awareness on disability issues and any chronic medical condition. We welcome contributions from readers who have a disability or any special needs, caregivers, advocates of disability groups, or anyone living with any chronic medical condition. E-mail your stories to email@example.com. Published contributions will be paid, so please include your full name, IC number, address and contact number.