“NO one can look down on you unless you allow them to, ...don’t give them this right!”
The words leap out from the page, reminding me that it’s my right to stand tall. It may not be rocket science, but it resonates with me. I feel encouraged. And even more so since it comes from someone as special as Rachel Siew Suet Li.
This 28-year-old suffers from Mucopolysaccharidoses type IVA or Morquio Syndrome for short. It’s a rare degenerative condition that affects her physically but, fortunately, not intellectually. “I guess you can say I’m the lucky one among the unlucky ones,” she quips.
The quote is the first in Siew’s book titled Little Book, BIG Secrets with the subtitle How to blend in with everyone when you were born to stand out.
It’s her first publication in collaboration with the Make It Right Movement (MIRM) and Microsoft Malaysia. All proceeds from the book sales will be channelled to the Rachel Siew Trust Fund, a trust fund set up to not only help finance her expensive enzyme replacement therapy (ERT) that costs an upwards of one billion ringgit a year, but also to help kick start the same treatment for other patients with the same condition.
Standing at only 92.5cm (a little shorter than the average height of a 3-year-old) and with limited motor abilities, it’s an understatement to say that Siew faces tremendous challenges every day. “There are a lot of things that people take for granted. Even the simplest of tasks such as climbing the stairs or pushing the buttons in the lift may seem like a breeze for able-bodied people. But not for me,” confides Siew.
The book contains some 50 inspirational quotes that come from her everyday experiences. Shares Siew: “They speak to me whenever I’m down. I hope they do the same for all who read them. My advice is to internalise it and believe.”
Each quote may not be new or original, but it’s the personal accounts tied to them that make them meaningful. After reading the last page, I couldn’t help but shed a tear. Not a tear of sadness but a tear of resolve and faith — that no matter what, things will be all right.
Her mother was informed of her abnormalities during a regular check-up at a clinic when she was 2 years old. The doctor eventually referred her to a hospital in the city, hoping that it would be able to shed some light on her condition. Unfortunately, there were no treatments for it then and no hospitals here (in the country) were equipped to treat such a rare condition. It was in the early 1990s when Siew was diagnosed with Morquio Syndrome by a hospital in the UK. She was three then.
“One day, the doctor just closed my file and told my mum that nothing much could be done. The only reprieve they gave her was that I wouldn’t die the next day. My mum and I left the hospital in tears. She was crying because she was afraid of what would happen to me next, while I cried in relief that I would no longer be poked and prodded by doctors,” recalls Siew.
The National Organisation of Rare Disorders in the United States estimates that Morquio Syndrome affects one in 200,000 children. However, many with this disorder often go unrecognised, under-diagnosed, or are misdiagnosed altogether. This makes it hard to determine their actual frequency in the general population.
In this country alone, it’s believed that there are only 16 to 19 people registered with the disorder. “We’ll never know how many unregistered ones are out there because there’s just not enough of awareness for this disorder,” says Siew.
Currently, there are only two who are undergoing the ERT treatment at Hospital Kuala Lumpur, one being Siew herself, who started the treatment late last year.
The treatment is usually performed once a week where the drug called Vimizim is administered intravenously. This really expensive drug was only FDA-approved in 2014 and subsequently made available in this country a year after. It may seem extravagant to some, especially since this therapy won’t cure Siew of her disorder. Instead, all it does is stop her condition from further deteriorating. But for Siew, it’s her miracle baby.
“Although it’s expensive, it has given me precious freedom and independence,” she shares, adding: “I’ve spent more than 20 years without the enzyme in my body and I’m limited in my abilities. Now, I want to know what changes or differences it will make. After all, life isn’t measured in quantities, but quality.”
Despite being riddled with disabilities and daily challenges, there’s one thing that Siew will always hold dear: her sound mind. The quote from her book, “People can walk WITH you but not FOR you. Every struggle makes you wiser and stronger…” beautifully captures her elation during her proudest moment — when she graduated with a law degree.
“It was an extremely tough road but I made it,” she reveals, looking thoughtful. Adding, she says: “But what made it even more special was that I got the approval to complete my degree in the UK for two years. It took a while to get it (the approval) but I got it eventually. I was entirely on my own in a foreign land.”
So now Siew is determined to put her education to good use by knocking on the doors of several governmental ministries in Putrajaya in the effort to procure funds for her treatment and to help acquire governmental-sanctioned budgets for patients suffering from Morquio Syndrome. “I’m there so often that even the security guards know me by name now,” she shares, chuckling.
No matter how rough the road will be for her, she’s determined to smile. “Every day, I’ll thank god for the new day and hope it’ll be a good one,” confides Siew, who goes on to share that much of her strength comes from the love of those surrounding her.
“I’ve been blessed throughout my life to always be surrounded by wonderful people who love me more than I love myself, especially my mum who has been there always. She’s my pillar of strength. Hers is the last face I see before entering an operation theatre, and also the first when I wake up,” confides Siew, her smile soft.
Suffice to say, she’s a real fighter. Looking earnest, she advises: “No matter who you are, you have to find ways to overcome whatever hurdle that comes your way. Learning to adapt to whatever that’s being set in the world is the best way to live. If you were to wait for the world to adapt to you, you might need to wait a long time.”
As our chatter turn to the subject of our love for Disneyland and Siew wondering if she could get a character part at the Park as one of Snow White’s dwarves, our tummies start to rumble, reminding us that it’s way past lunch hour.
How would you describe your journey so far, I throw her a final question before we adjourn for lunch. A pause, and then Siew replies: “The journey may have been difficult and winding, but it’s not the end of the road. It’s merely a road less taken.”
A small smile playing at the corner of her lips, she concludes: “It may not be as rosy as I envisioned it to be but that doesn’t mean you can’t enjoy the carnations and daisies along the way, right? And remember, roses have thorns. So, admiring other types of flowers may not be a bad thing either.” email@example.com
Little Book, BIG Secrets – How to blend in with everyone when you were born to stand out
By: Rachel Siew Suet Li
Published by: Summertime Publishing and Faceberry Publications