#ThisIsMe : Rachel’s Battle for Life
Imagine you have a child whose bones, joints, kidneys, hearing and even eyesight are deteriorating over time. Then imagine that the only way you can afford the expensive treatments required for your child to survive is by accepting assistance from the authorities. But then, imagine that your appeal for funding for these treatments has been rejected and, without these, your child will not survive the year.
Rachel Siew Suet Li, 26, is precisely in this horrific position. She suffers from Mucopolysaccharidoses (MPS IVA) also known as Morquio Syndrome, a rare genetic disorder that affects her physically but not intellectually. She has weak fingers, wobbly joints and cannot hold anything heavier than a Samsung phone.
Morquio Syndrome is a rare genetic disease in which the body cannot break down sugar chains called glycosaminoglycans that help build bone, cartilage, eye cornea, skin and connective tissue. As a result, these sugar chains collect in cells, blood and connective tissues and cause damage over time.
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. Feisty and full of life, Rachel was a popular young girl amongst her fellow students and well-liked by all her lecturers.
2011 was a memorable year for Rachel and her mother as she graduated with a prestigious law degree from the University of Hertfordshire during which she was given a standing ovation. It was a dream come true, the culmination of many years of hard work, pain, courage and determination to reach that point. Rachel reminisced about a special moment with her mother before this momentous occasion, “When I attended mum’s MBA convocation years ago, she placed her mortar board on my head and said to me: ‘I can’t wait to see you place your mortar board on my head’. It was now my turn to place the mortar board on mum’s head. No words could describe our feelings as we hugged each other.”
In 2016, Rachel joined the BAC Education Group as a member of staff and quickly became a vital part of the BAC family. Her incredible attitude towards life and her resilience in facing adversity earned the respect of her peers whilst making her an inspirational figure to everyone on campus.
Where many might have shut themselves away from the world, this resilient young woman does not believe in giving up hope. Rachel became a national and international advocate for the Malaysian Lysosomal Diseases Association as she believes that; “Every challenge I overcome is a feather in my cap. I want to lead a purposeful life”.
She had her first corrective treatment when she was 3 years old. She underwent a cervical fusion where her C1-C3 bones were reinforced with bones from her skull. This was done to prevent cord compression or neck fracture if she were to fall. Since then, Rachel has undergone many procedures and last year she began treatment for Morquio Syndrome with a weekly dose of Enzyme Replacement Therapy (ERT) at Hospital Kuala Lumpur.
“After waiting for two decades for a cure, my prayers have been answered. Vimizim, a drug to replace the missing enzyme in Morquio syndrome, has been approved by the FDA and is now available in Malaysia. It will give me a chance to lead a more independent life, and enable me to do simple things like climbing the stairs and opening the door,” said Rachel.
However, ERT is a life-long treatment and one 5mg vial costs RM 4,000. Rachel requires 400 such vials each year, which means a whopping RM 1.6 million yearly (approximately USD 377,000), a sum beyond the means of her family.
In 2016, Rachel’s appeal to Kementerian Kesihatan Malaysia (KKM) for ERT funding was rejected for the second time. Without this treatment that provides the enzyme needed to breakdown the sugar chains in her body, Rachel will progressively get weaker and weaker. She ultimately will not survive.
However, with your help, she will. We are raising RM 1.6 million in an effort to give Rachel a fighting chance at a life she desperately wants. Please reach out and make a year-end gift, no matter how small, so Rachel may continue to live.
Your generous gift will mean that Rachel will be a step closer to receiving ERT for a year and a second chance at life.
If you would like more information on Rachel and her condition, please visit her Facebook page: the Rachel Siew Suet Li Trust Fund
Any donations could be made via this pledge formto the Rachel Siew Suet Li Trust Fund.
Thank you for your kindness and generosity.