Rachel never lets her differences get in her way. Photo credit: Facebook
This story shares the journey of Rachel, who despite bearing a rare disease, overcame her differences and is now inspiring others to do the same
Meet Rachel. Through our eyes, she might look different. But, through hers, we are all the same. Her path to success led to the same destination, although the route she had to take had a lot of bumps and challenges along the way. Rachel’s complete turnaround from hating herself to loving herself inspires all youth going through tough times, either physically or mentally.
At a young age, Rachel was diagnosed with category 4A Mucopolysaccharidosis, a sporadic and relatively unheard disease that meant her body would retain toxins/harmful elements rather than discard them. Her family was advised to seek more advanced help based on a retired professor’s pre-diagnosis, and the journey of her struggle has started ever since.
At a tender age, most of us, including me, had a ‘basic childhood’. But now I quickly realise that there is no such baseline as to what a ’normal childhood’ is. For us, it would be having playdates, eating candies, living in peace, and relaxing most of the day. But for Rachel, her normal day was filled with multiple checkups and stressful moments. She could never go out unless it were a visit to the clinic. She recalled how traumatising the whole experience of being pinned down and forced to take multiple painful injections was.
Soon, her family flew with her to the UK, to seek further treatment. Like any child, Rachel was extremely thrilled to visit; little did she realise it was a hospital visit, where she was officially diagnosed. She underwent a lengthy operation and had to wear a crown-structured device, infused into her skull, for nine months. For her, this was normal; but for the general public, it was not.
Seeing her appearance, Rachel was a victim of constant judgment and discrimination. She recalled how people would just stare, and her self-confidence would shatter. Fortunately, she had her mother by her side, constantly reminding her that it is okay to be different.
“No matter what in life, you are also gifted, and you have what everyone has. It’s just that different package, different size. If everyone is the same size, life would be so boring.”
As Rachel grew, so did her acceptance of who she was. She went on to study law in the UK but came back right after graduating, as she missed her deep connection with her friends and family in Malaysia. But now, she went out more, made new friends, and felt happier day by day. Even though her life never was and never would be the same, she made it a point to be treated like any other person. Her ability to fend off constant judgment inspires me with a beautiful message: build a strong mind, and the body will follow.
Rachel and The Morquio Angels. Photo credit: Facebook
Establishing Her Fund
In 2014, Rachel discovered that injecting man-made enzymes into her body would stop her body from further deteriorating. The only issue? The cost of treatment is a staggering 1.6 million Ringgit per year. Unable to afford it, she desperately sought government sponsorship. After a lot of back and forth, in 2016, she received it, and when she started her treatment, her mother established what would be a new chapter in Rachel’s life: a trust fund.
The Rachel Siew Suet Li Trust Fund was established with the primary objective of raising awareness of her rare disease. It’s also a Plan B, in case the government stops sponsoring her treatment, she has some funds to fall back on.
The treatment is highly effective, and if one thing Rachel wishes she could have done, it would be to start this treatment much earlier on, before her body deteriorated as much. Being the kind-hearted woman she is, Rachel cannot bear to see others suffer as much as her and so, as of today, Rachel uses her Trust Fund to kickstart the funding for other MPS-borne children facing financial issues.
The Future? You Decide!
“Where would I picture myself 5 years from now? I would see a much more inclusive Malaysia.” Readers, it is our job to ensure we establish a much more inclusive society that is more open-minded and friendly towards all kinds of people, no matter how different they are.
Yes, at first, it may surprise you a little bit. But they, like us, are people too. People with real feelings, people who want to feel like they belong. Next time you see someone going through a physical disability, wave at them or exchange a few greetings. Who knows, they could become your close friend someday!
An Inspiration For All
“I am very grateful that I can wake up every morning.” It sounds rather casual saying for Rachel to say, but it gave me the wake-up call I needed. Life is too short and full of unexpected events, so whatever we do have must be treasured. Now, I feel even more grateful for my life so far.
Rachel’s life deeply touched me; despite the multiple challenges and discrimination she faced, she kept her chin up and brushed it off. Her story also teaches us that family is always first. They will be by your side, be it through thick or thin. Rachel’s bond with her mother has always been very tight-knit. “My mum is my pillar of strength.” Hearing this makes me extremely grateful for all my parents’ unconditional love and support.
She also reminds us to get back up when we stumble. From hitting rock bottom in self-esteem to becoming an inspiration for all children out there, Rachel reminds me and others too that we should love ourselves and embrace our differences, rather than run away from them.
“Life is not a bed of roses, so if you’re not picky, there are always carnations, sunflowers, or even daisies along the way.”
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