Donation Appeal
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Help Me Save My Life!

Raised So Far MYR 3,050
0% Complete
Target : MYR 1,600,000

About Appeal

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/

Thank you so much for your support and generosity! Please also help to share this page with your friends and family.


Media Articles:

Alternatively, you can also support me by 

Buying my Book (https://simplygiving.com/event/littlebookbigsecrets)

or 

Sponsoring One Vial of VIMIZIM (https://simplygiving.com/event/vimizim)


Recent Donors 15

  • Anonymous

    Love to you, Cili Padi!

    MYR 250 30/09/2017

  • Anonymous

    MYR 150 20/08/2017

  • Anonymous

    MYR 100 10/08/2017

  • Anonymous

    MYR 100 07/08/2017

  • Freda Yap

    There's always hope ❤️

    MYR 50 07/08/2017

  • ANITA kaur

    MYR 75 27/07/2017

  • Anonymous

    MYR 250 27/07/2017

  • Anonymous

    MYR 50 25/07/2017

  • Shirley Tan

    MYR 150 25/07/2017

  • Anonymous

    MYR 1,000 25/07/2017

  • Amy Tan

    MYR 150 25/07/2017

  • Lee Yh

    MYR 100 25/07/2017

  • Anonymous

    MYR 250 24/07/2017

  • Winnie Lin

    MYR 75 24/07/2017

  • Wong Chen Li

    MYR 300 24/07/2017