Hello, my name is Rachel Siew Suet Li. My passion is to empower others especially those challenged individuals. My message is to help those who can’t help themselves! I would love to live in an inclusive community.
I have a rare degenerative genetic condition known as MPS IVA aka Morquio Syndrome. I am 27 years old and have been living with this condition since birth. Morquio syndrome is a rare genetic disorder in which the body is unable to break down sugar chains that help build bone, cartilage, cornea, skin and connective tissue.
Because of my condition, I suffer from weakening bones and fatigue. I get short of breath easily, and walking will cause discomfort to my knees and ankles. I am unable to climb stairs or pavements. My bones at my joints are protruding and sharp, and I have an enlarged stomach which affects my other organs.
However, in spite of my condition, I have obtained a degree in law from the UK and am now the Community Advocate of the Make It Right Movement (http://www.makeitrightmovement.com/) , a CSR initiative company powered by Brickfields Asia College (BAC), my alma mater.
In February 2016, I discovered that Enzyme Replacement Therapy (ERT) treatment through the drug Vimizim, greatly improves my quality of life. For 20 over years, I have felt my body slowly deteriorate, but with the ERT treatment, I feel my energy returning. I am less short of breath, able to climb a few steps. My joints are now coated by stronger tendon and muscles and my stomach is not as enlarged. My biggest joy is that I am able to get out of my wheelchair and walk independently without support.
With ERT treatment, I am now given the gift of HOPE, I treasure every path I walk on and every step I take. ERT treatment has provided me with the needed stamina and I will continue to strengthen my muscles by staying active.
Unfortunately, treatment costs a staggering RM1.6 million per year and I need to raise funds for this as my appeals to the Health Ministry for funding have been rejected. The treatment, once started, cannot be stopped as it will result in adverse effects.
I sincerely hope you can help me with this treatment cost by contributing. You can learn more about me through the media articles below, or by following me on my Facebook Page here: https://www.facebook.com/pg/rstf16/about/
For and on behalf of Culture Charity Caring Season 8 University Utara Malaysia.
MYR 300 11/24/2020 12:30:06 PM UTC
May this small donation be of help to you Rachel. From Richard Junior Buntol
MYR 100 08/27/2020 08:36:08 AM UTC
Be strong!
MYR 200 02/04/2019 07:11:55 AM UTC
Hope u get better. Wish u all the best.
MYR 75 01/17/2019 05:37:56 PM UTC
You are cute & awesome. Cheers, friends of Anushia Subramaniam.
MYR 150 12/14/2018 08:17:31 AM UTC
U go girl
MYR 75 11/03/2018 03:36:52 PM UTC
MYR 300 10/20/2018 10:29:13 AM UTC
MYR 150 07/02/2018 02:39:35 AM UTC
Take care and never give up!
MYR 150 06/27/2018 08:49:43 AM UTC
MYR 10 05/27/2018 01:24:40 PM UTC
stay strong!!!
MYR 75 04/05/2018 12:37:40 PM UTC
MYR 20 02/25/2018 08:18:32 AM UTC
MYR 40 01/24/2018 09:53:39 AM UTC
MYR 150 12/26/2017 09:20:56 AM UTC
Love to you, Cili Padi!
MYR 250 09/30/2017 01:34:13 AM UTC
