Dreaming big

Rachel Siew speaks to Priya Kulasagaran about living with a rare disease, managing non-profit work, and the power of perseverance.

It is evening at the GS ARTCADE gallery in Petaling Jaya, and Rachel Siew Suet Li is in full organiser-mode for the night’s charity art exhibition. As she scans the room to make sure everything is in place, the 28-year-old shares that she never expected to be where she is today. As a young student, she had the typical idea: study for a degree, get a job in a related field, and work till retirement.

Upon enrolling at Brickfields Asia College (BAC) for her law degree, she found herself unexpectedly pursuing her dream of studying overseas. She credits the college’s founder and managing director Raja Singham for convincing her parents to let her spend her final year at the University of Hertfordshire, United Kingdom.

“Right up to the gates, my mother was holding my hand, asking me ‘You sure you want to go ah?’,” says Siew with a laugh. “Of course, once I was there, I did suffer; I realised I had been overly protected. Now I had to do everything myself — cooking, cleaning up, laundry, buying groceries — and I was homesick for two months. But it was an amazing experience, it was a dream come true.”

It is a familiar story of parental concern, but Siew’s folks had an additional layer of worry as she has a rare genetic disorder called Morquio syndrome. Also known as Mucopolysaccharidosis type IVA, the condition signifies a lack of an enzyme that breaks down complex sugar molecules called glycosaminoglycans. As large amounts of glycosaminoglycans accumulate in the body, patients risk organ damage in the long-term.

“In fact, as I’m talking to you right now, there’s a slight leakage in my heart valve. If you look at my eyes, you’ll see there’s a bit of clouding too. My left ear already has about 30% hearing loss. These are the minor things that have been progressively affecting my life. It’s just that I tend to focus more on the positive side, instead of dwelling too much on the negative side, so I carry on with things,” says Siew.

To say that Siew is “carrying on” is an understatement. Currently a community advocate for the Make It Right Movement (MIRM), the corporate social responsibility arm of BAC, Siew tours local campuses and organisations as a motivational speaker. She’s also written a book of inspirational quotes about her experiences, Little Book, BIG Secrets, and has set up the Rachel Siew Suet Li Trust Fund to raise money for her medical treatment.

“I want to fight for my comrades, who are younger and don’t know head or tail about the operations they have to undergo. I want to help other people, regardless of their condition – all of us have emotional trauma and stress. I want to help people face that, from my perspective,” says Siew.

Miracle treatment, hefty cost

Siew’s condition was first diagnosed when she was around two-years-old. After months of tests, her doctor “closed the file and told my mum that there was nothing more to be done”. Her parents however, persevered, sending her medical reports across continents. Eventually, she found herself at the Royal Manchester Children’s Hospital in the UK. “We were told there’s no cure, but with corrective treatment throughout my life, quality of life can be ensured,” adds Siew.

Her first corrective procedure was a cervical fusion when she was three-years-old. The treatment involved a reinforcement of her C1 to C3 bones in her spine, to prevent the risk of fracture or cord compression. Another major treatment occurred when she was 16-years-old: a leg alignment surgery for her knocked knees, which had overlapped and affected her movements. “I had both my legs in casts — the itching was the worst. I used to take chopsticks to scratch my legs! It took me a year to gain my mobility again,” says Siew.

Last year, with her knocked knees giving problems again, she had to undergo another surgery for her legs. As she was working for a property house based in Kuala Lumpur at the time, this meant doing her work remotely while recuperating. The recovery period this time was different, as it had halved to six months. Siew believes this is due to a new “miracle” drug called Vimizim.

First approved by the United States’ Federal Drug Authority in 2014, Vimizim is an enzyme replacement therapy to prevent the further degeneration of Morquio syndrome patients. Since it was introduced in Malaysia in 2015, only two patients are said to be undergoing the treatment at Hospital Kuala Lumpur due to the hefty price-tag.

In Siew’s case, the treatment costs RM28,000 a week — culminating in a whopping RM1.6 million a year. Patients are also cautioned against abruptly stopping the treatment, as there is no certainty as to what the repercussions might be. “When the pharmaceutical company approached me, I was so delighted; then they told me the price,” says Siew. “It was like, you show me the light at the end of the tunnel, and then grab it away from me. My family and friends advised me against starting treatment; ‘you’re not that bad now, why play with fire?’ they said. But I wanted to experience having that full potential of my life.”

For her first year of treatment, Siew was sponsored by the Malaysia Lysosomal Diseases Association (MLDA) and a pharmaceutical company. “But MLDA can’t fund me for life, they have so many other patients, so I kicked off the trust fund,” she adds. “I can feel the difference now; for example, I used to avoid staircases, now I can climb at least one flight. You might think it’s not a big deal, but for me it’s an improvement. Its little things like this that make me wake up and continue fighting for the fund.”

“Treat us like normal human beings”

Being visibly differently-abled, Siew has had her share of patronising — if not downright rude — encounters with the general public. With her height of around 90cm and weighing just under 20kg, ignorant people have even tried to pick her up as if she were a child. She shares a recent experience on the LRT, where a boy was pointing her out to his mother. “His mum was like, ‘Don’t point, don’t point!’. I overheard the mum telling him to eat his vegetables, so I also told the boy to do so, otherwise he’ll end up like me. He’s probably a vegetarian now!” she says, giggling.

It took Siew some practice to be that ballsy. A defining moment was when she was in Primary Two, and had a group of younger pupils mockingly trailed her around school for a week. Not wanting her mother to get involved, Siew came up with her own plan. “I turned to face the leader of the group and said: you must be deeply in love with me to keep following me. He turned red and got a taste of his own medicine because now everyone was laughing him. I haven’t seen him since; hopefully he’s found his real true love now!” she says.

“No one can look down on you unless you allow them to, so why should I allow them to?” adds Siew. “We want the same thing as anyone else, to be respected and accepted. We need more inclusiveness in the workforce too, I wonder why Malaysian companies refuse to give us a chance at employment, we’re still capable. How else are we going to be independent and contribute to society?”

It is a sentiment echoed by MIRM Community Development head Brian Lariche, as he speaks about Siew’s own employment. “Being inclusive doesn’t mean tokenism. We shouldn’t romanticise what she goes through, physically and emotionally, but we both have to learn how to manage that. So we understand her needs, she does occasionally gets the tough talk from me — just like any other employee. She’s part of the team, and I depend on her to deliver in supporting the non-governmental organisations (NGOs) we work with,” he says.

While a lot more needs to be done in this area, Siew thinks that things are moving in the right direction. “The RM10 million allocation in the Budget 2018 for rare disease treatment is an example,” she says. “It may not sound like much, when you consider the cost of my own treatment, but it’s a good stepping stone. At least we’re talking about it more now, there’s recognition of the issue.”

At the moment, Siew is taking things one day at a time. Although currently caught up with the running of the RSTF and her other NGO work, she’s not given up on her goal of retaking the bar examination. “I took up law because it’s a versatile degree, like a golden key that can unlock many doors. I like reading a lot as well, and I’m always looking to understand the reasoning behind why things are the way they are. I didn’t think of practising at first, but then I thought, why not just do it (the bar qualification) so I have the option in the future,” she shares.

Even as she displays nerves of steel under a bubbly exterior, Siew admits to having her off days too. “I’m only human, I do get depressed at times,” she says. “But I tell myself, you can have this time to be sad then you have to bounce back. I try and psych myself up. The rainy season won’t be forever, there’ll be sunshine and rainbows someday.”

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