RAISING FUNDS TO HELP RACHEL SIEW FUND HER LIFE-SAVING TREATMENT
Imagine being born with a rare condition in which your bones, joints, kidneys and eyesight steadily deteriorate over time. A condition in which, without treatment, your chances of survival are slim because your organs will fail. And that, unfortunately, the treatment — which you cannot stop or the consequences would be damaging — costs more than RM1 million a year. Every year.
And what if your appeal for funding to governmental and private organisations alike, have been in vain? You have no choice but to fight for your life using all means possible because.
Meet Rachel Siew Suet Li, a 27-year-old battling Morquio syndrome. A cheerful dynamite of a woman standing at 92.5cm tall and weighing under 20kg, Rachel currently speaheads the ‘Adopt A Hope’ campaign to create greater awareness of her disease and raise funds for her yearly Enzyme Replacement Therapy (ERT) via the Rachel Siew Trust Fund (RSTF). Treatment costs a staggering RM1.6 million per year and Siew is raising funds for her second year of treatment as countless visits to the Ministry of Health to plead for funding has been in vain. She is the second Morquio patient to receive this life-saving treatment in Malaysia. The treatment, once started, cannot be stopped as it will result in adverse effects.
“After more than 20 years of waiting for a ‘miracle’, there is now a treatment that can help prevent my condition from deteriorating further. This is a lifetime treatment and if I don’t set up my own trust fund and campaign for myself while appealing to the authorities, how am I going to continue my journey in life?” says Rachel, a law graduate.
Rachel is inspiring and courageous, to say the least. She read Law in the University of Hertfordshire in England, fending for herself entirely and settling in well in spite of her limitations and being far from home. Till today, she stares each and every trial in the face and refuses to be daunted, holding firm to importance of self-acceptance and perseverence.
Rachel was formerly part of the Cornerstone International Properties family before moving on to work full-time as a Community Advocate of the Make It Right Movement (MIRM) powered by Brickfields Asia College (BAC).
“I was blessed to gain employment at Cornerstone International Properties; they accepted me completely, including my limitations. When I was there, I never considered it as ‘going to work’, but like going back home because everyone there became a big part of my life — my family! It’s a struggle to get a job these days, what more for individuals with limitations like myself. I sent countless of CVs and got many rejections, while some never even responded. I hope other companies out there would consider offering employment to individuals with Morquio or other limitations. We may not be as fast as a fully-abled person, but with time and guidance, we will excel,” she says.
Rachel is in need of funds for her second year of treatment and we at Cornerstone International Properties are stepping up to support her. We have set up a crowdfunding platform as part of our effort to create awareness of Morquio Syndrome and raise funds for Rachel’s treatment. All proceeds go entirely to the Rachel Siew Trust Fund.
“Rachel was, and always will be part of our family. She is a bright, courageous and inspiring person who has given all of us in the CSI Prop family a greater appreciation for life and we want to help her as much as we can. We hope the crowdfunding platform will reach as many individuals as possible and that it will raise funds for her treatment. Rachel and those like her deserve support and a fighting chance for life,” said CSI Prop spokesperson Virata Thaivasigamony.
Please donate to the crowdfunding platform here <<insert link>> and join Rachel Siew in her quest to live a fulfilling life. ALL PROCEEDS GO TO THE RACHEL SIEW TRUST FUND. #RSTF #ThisIsMe
Here’s a link to the Rachel Siew Trust Fund: RSTF Facebook site