Community sets up trust fund to benefit Rachel Siew Suet LiJanuary 10, 2017
BAC and IACT provide a unified voice for Rachel Siew Suet Li, a courageous individual living with a rare disease so that she won’t have to fight her battle alone.
To kickstart 2017 and to usher in the Year of the Rooster how about saving a life?
Rachel Siew Suet Li suffers from Mucopolysaccharidoses (MPSIVA) also known as Morquio Syndrome, a rare degenerative genetic disorder that affects her physically but not intellectually. She has weak fingers, wobbly joints and cannot hold anything heavier than a mobile phone.
Morquio Syndrome is a rare genetic disease in which the body cannot break down sugar chains called
glycosaminoglycans that help build bone, cartilage, cornea, skin and connective tissue. As a result, these sugar chains collect in cells, blood and connective tissues and cause damage over time. Periodically, the patient is forced to undergo numerous corrective surgeries as the body develops with age, growth and its physiological limitations.
Treatment for Rachel’s condition costs RM1.6 million per annum – for life.
Despite her struggles throughout life, Rachel has proved to be an inspiring young woman and has remained positive through all her ordeals. Her resilience and determination to live a normal life saw her enrol for the UK Transfer Degree Programme – Law at Brickfields Asia College (BAC) at the end of which she transferred to the University of Hertfordshire for her final year in 2010 and completed it with flying colours. Feisty and full of life, Rachel is a popular young girl and well-liked by all walks of life.
On January 11, Rachel will be launching her trust fund called the Rachel Siew Suet Li Trust Fund #RSTF in order to generate the much needed funds for her enzyme replace treatment (ERT). With music and entertainment, she would like to invite you to be part of her journey to obtain ERT.
If you would like to contribute but are unable to attend the launch, you can make a donation @ Alliance Bank (Rachel Siew Suet Li Trust Fund A/C 1414 900 1005 2019).
For more enquiries, contact Jinie at +6016 7788625 or email [email protected]