04 Sep '11, 11am

#RareDisease News: Chloe – the little girl who refuses to give up | The Online Citizen

#RareDisease News: Chloe – the little girl who refuses to give up | The Online Citizen

~by: Elliot Aruldoss ~ ~pictures: Shawn Danker ~ Chloe is a little girl diagnosed with a rare disorder known as ‘Pompe disease’. The disease weakens her overall muscles, including that of her heart. It is also such a rare disease that it is only found in 1 in 40,000 live births worldwide. Unfortunately, the disease is only treatable, not curable, and the only treatment available to her is Enzyme Replacement Treatment (ERT). If left without treatment, her muscle weakness will lead to respiratory weakness, resulting in death from respiratory failure. Whilst Chloe’s total medical costs are an estimate between the range of $200,000 to $300,000 a year, she is the first person in Singapore undergoing treatment for Pompe’s. As such, Kandang Kerbau Women’s and Children’s Hospital (KK Hospital) and Genzyme (a pharmaceutical company producing the enzyme (Myozyme) that Chloe needs fo...

Full article: http://theonlinecitizen.com/2011/09/chloe-the-little-girl...

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