Rachel Siew Suet Li Trust Fund (RSTF): A Diminutive Woman’s High Hopes

Rachel Siew may be of small stature at just 92.5cm (a little over three feet), but the 32-year-old’s dreams, achievements and advocacy work are anything but. Rachel’s physically hindered by Morquio Syndrome, a rare genetic disorder affecting bone development and restricting growth. Also known as MPS IV-A, those with the condition rarely live beyond their 20s. The condition has indeed not stopped Rachel from living a fulfilling life. She’s a law graduate, author, motivational speaker and works tirelessly advocating for the disabled and those afflicted by rare diseases. “I don’t care about how long I live. I just want a quality life for as long as I live,” she says. Rachel’s improved wellbeing could be attributed to the groundbreaking enzyme replacement therapy (ERT) she began five years ago. However, the treatment costs RM1.6 million a year, which Rachel and her mother, Sharon Soo, can’t afford. Sharon set up the Rachel Siew Suet Li Trust Fund (RSTF) in 2016 to support her daughter’s lifelong ERT and medical needs. “We managed to pay for the treatment for the first two years through contributions and sponsorship while trying to seek funding from the Health Ministry. After countless applications and appeals, the ministry finally agreed to sponsor Rachel’s treatment three years ago,” Sharon explains. This assistance is, however, dependent on an annual review and could end abruptly. Moreover, stopping the treatment will mean that Rachel’s health benefits will start to be reversed. Sharon says keeping RSTF alive is more important than ever. “Rachel could lose the government funding any time,” says the senior who raised her daughter single-handedly. Rachel’s quality of life has improved tremendously since starting the treatment. “I want people to know that this therapy works,” she says. “Before, I couldn’t walk and would hyperventilate a lot. I certainly can’t run a marathon, but I can climb a few steps. My stamina has improved, and I’m no longer dependent on a wheelchair 24/7. “I imagine a person who embarks on ERT as a child will have a much better standard of living than when I started on the treatment in my 20s.” A primary aim of RSTF is to also get the government to fund children living with this and other rare genetic conditions. In addition, Rachel hopes to be a role model to families affected by the disease. “Depending on one’s perspective on life, living with this ‘gift’ need not mean constant rainy days. You can have rainbows and sunshine, too,” she adds. Those keen to contribute can sign up for RSTF’s ongoing ‘A Dollar A Day Campaign’. “That’s just RM30 a month or RM365 a year,” Rachel says. “But, of course, any amount will go a long way in helping me save my life and that of others like me in the future,” she adds. Contributions and pledges to RSTF can be made through: The Rachel Siew Suet Li Trust Fund Alliance Bank Malaysia Berhad Account Number: 1414 900 1005 2019 Like and follow RSTF and Rachel on Facebook (https://www.facebook.com/rstf16), LinkedIn (https://www.linkedin.com/in/rachel-siew-6271bb14b), and Instagram (https://www.instagram.com/rstf.2016/).