Tell us about your journey. Who is Rachel?

 Everyone deals with crossroads at a certain point in their lives but I met mine very early in
life, I am born with a rare degenerative genetic condition known as Mucopolysaccharidosis
(MPS) under the category IVA also known as Morquio Syndrome (MPS IVA)

 MPS IVA basically affects both internal and my physical body for instance my hearing, vision,
heart, lung, bones. The only area that it did not affect is thankfully my intelligence and hair
(crowning glory!) =P

 Since then, I’ve gone through numerous trials and turbulences and faced many crossroads
namely health matters, operations, education, employment and the most current one is
sustaining funding for my medical treatment.

 Generally, there are no cure for all genetic conditions BUT there are treatments for some
genetic conditions. Treatments are there to halt further deterioration of medical condition.
The crossroad I came across here was

1) This is a lifetime once weekly treatment. Once you start it is best if you do not stop or
there will be greater repercussions
2) The treatment is via intravenous (I have a strict phobia of needles back then, I still dislike
needles but the phobia is not as bad now!) and I have to poked weekly
3) The cost of the treatment depends on my weigh. It is RM28,000 per week (RM1.6 mill
per annum)

After many sleepless nights, I decided on the path to take at this crossroad, I took the risk to undergo
this treatment after taking into consideration and weighing both the pros and cons as I would like to
feel what the treatment will do to me. I value quality more that quantity life and would not want to
leave in regret if I decided otherwise.

What do you hope to achieve in this journey?

 Due to that, Rachel Siew Suet Li Trust Fund was established in 2017 with the objective to
raise the needed awareness of MPS IVA, its treatment and also to raise fund from the public
while appealing to MOH for funding.
 While running the trust fund and undergoing weekly treatment, I’m also working as a
Community Advocate for Rare Disease in Make It Right Movement (MIRM), a CSR arm of
BAC Education Group. I am blessed to have supportive employers and colleagues who allow
me a day off during my treatment days and gave full support towards my Trust Fund.
 In fact, Mr Raja Singham, MD of BAC happens to be one of my trustee. {You may not need to
include this]
 As a Community Advocate in MIRM, I am exposed to the NGO world and mix with all walks
of life. It gave me a sense of achievement to be able to assist in making the community a
better place especially when I am task with handling projects involving them.
 I have RSTF on Social Medias (Insta and FB), my aim is to create the needed awareness of
MPS IVA to the public and many parents of newly diagnosed individuals contacted me to get
moral support and to get assistance on the next step for their special child. I somehow
became the middle person to contact them to the right channel as I’ve knock on numerous
wrong doors previously so I do not want them to go through the same faith.
What is the biggest misconception about mucopolysaccharidosis?

 More like biggest misconception for all disabilities not only on MPS
 In all medical conditions, it can be categorised from mildly affected to severely affected,
many see my small stature and automatically self-diagnosed me as an intellectually
challenged individual and refuse to ask me questions that should be directed to me but ask
the person I’m with instead.

What do you want people to know?

 Contrary to popular belief, our medical condition is not transmissible. Hence, feel free to
treat us like how you would like to be treated.
 We know that we look very different compared to you and it is OK to look at us BUT please
stop STARING at us as if we are from a different planet altogether
 All we want Is EMPATHY and not SYMPATHY. They may sound similar but they are very
different.
 Employers, give us an opportunity to work with you by providing vacancies that
accommodate our needs.

How are you living your best life doing what you do?

 I’m a mortal just like everyone else so there is definitely some down moments and the word
‘giving up’ did run through my mind numerous times BUT I did not let it get to me and would
bounce back up to continue fighting after taking a few moments off
 I try to focus on the good things that had happen throughout my struggle like being able to
communicate and work with like-minded individuals and being blessed with supportive
family members and friends rather than the stuff that hurts.