Rachel Siew Suet Li Trust Fund (RSTF)
Who is Rachel ? Rachel Siew is a Law graduate from UK, witty & bubbly young lady born with a rare degenerative condition known as Mucopolysaccharidosis (MPS) IVA or Morquio Syndrome. Standing at 92.5cm and weighing less than 20kg, this condition affects her physically but not intellectually. There is no cure for all genetic conditions but is monitored through corrective treatment/surgery to provide quality of life. Rachel has undergone numerous surgeries from Cervical Fusion (C1-C3), grommet insertion to both her ears, adenoid removal and twice osteotomy to straighten both her severely knocked knees. Diagnosed with MPS IVA at the age of 2, Rachel is born without an enzyme hence her system is unable to discard toxins from her body. The accumulation of the toxins progressively damaged her bones, sight, hearing and organs. In 2014, Federal Drug Association (FDA) approved Vimizim, the drug to treat MPS IVA through Enzyme Replacement Therapy (ERT). This lifelong treatment is administered intravenously on a weekly basis at Hospital Kuala Lumpur (HKL) and there will be adverse effects if treatment is not continued. Cost of Vimizim is at RM4,000 per vial of 5ml. Based on Rachel’s weight of 20kg, she needs 7 vials per week at a cost of RM28,000. Per annum is estimated to be at RM1.6 million. It is not a sum any family could afford. RSTF was founded in 2016 by Rachel’s mother, Ms ML Soo solely and exclusively for the purpose of raising funds to support Rachel’s lifelong ERT and medical needs. After numerous appeals to the Ministry of Health (MOH), Rachel was granted the ERT funding subject to an annual review and budget allocation. Her courage and dreams … Petite Rachel is filled with drive and determination to lead a purposeful life. Beside being a Law graduate, she is also a Motivational Speaker, participated in a differently-abled Beauty Pageant, Model, Author of ‘Little Book BIG Secrets’, Treasurer of Malaysia Lysosomal Diseases Association (MLDA), Vice President of Malaysia Disability Youth Council (MDYC) and is attached to Brickfield Asia College (BAC), PJ. Despite her physical challenges, she does not allow her limitations to limit her life.
How you can help
RSTF is managed by a group of reputable Trustees who are appointed and not related to the family. All contributions/pledges can be made payable to : Rachel Siew Suet Li Trust Fund Alliance Bank Malaysia Berhad Account Number : 1414 900 1005 2019 Note *: international contribution can be pledged via paypal. PM Rachel at RSTF FB Your support is HOPE to Rachel ! Be an Amazing Senior ! Visit Rachel Siew Suet Li Trust Fund at the following social media platform and share with your family, friends, associates and network throughout the world! Facebook: https://www.facebook.com/rstf16 LinkedIn: https://www.linkedin.com/in/rachel-siew-6271bb14b Instagram: https://www.instagram.com/rstf.2016/