One of the patient with Pompe disease and is currently being supported by the Rare Disorder Society Singapore is Chloe Ma. Chloe was born in 2009 and was diagnosed with Pompe disease when she turned six months old. She was the first baby in the history of Singapore to be diagnosed with Pompe disease and to uundergo the Enzyme Replacement Therapy (ERT). Chloe has to under ERT on a bi-weekly basis at KK hospital and the overall cost of the treatment amounts to approximately $300,000. And since ERT is a lifelong treatment, you can imagine how heavy the financial burden is on the her parents.
Chloe's story has been featured in the various media such as The Strait Times, The Newpaper, Lianhe Zabao, Wanbao, Mediacor Channel 5 and Channel 8. Her sharing has increased awareness to rare disorders such as Pompe disease in Singapore and brought many families together.
Picture taken from The Straits Times
The Rare Disorder Society Singapore have assisted Chloe's family under the "Power for Life" program, whereby they provide the family with $80.00 per month to help them with their utilities charges. The Society also hope to raise more funds to help in assisting the family as Chloe's living needs add up to almost $3,500 per month (just Chloe's alone, not her whole family, must be hard for her parents!).
Chloe is 5 years old now and have made good progress. Her heart is functioning well and her disease did not affect her learning abilities.
You guys can support Chloe by contributing directly to her CDA (Child development account) : http://savechloe.com/
To learn more about Chloe's condition: https://www.facebook.com/savechloe
To find out more about the Rare Disorder Society Singapore: http://www.rdss.org.sg/
It's quite interesting that Pompe's disease is listed under Rare Disorder Society Singapore because I don't think Andersen's disease (Glycogen Storage Disease 4) is listed under that society.
ReplyDeleteSo does the organization just support them financially? Or is there something else that they do?
The main thing that the organization does is that they organise campaigns to raise funds for the kids for surgeries or medical equipment as the surgeries and equipments can be costly. So you can say that they are actually a charity organisation :)
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