Newscut Name 姓名: Hiew Jia Ying 邱嘉瑩 & Hiew Zhi Qian 邱淑慧
Age 年龄: 6 years old & 4 years old
Condition 病情: Aromatic L-amino Acid Decarboxylase-AADC 芳香族L-胺基酸脫羧酵素 **Aromatic L-amino Acid Decarboxylase-AADC is a rare disorder that affects the way signals are passed between certain cells in the nervous system. Signs and symptoms of AADC deficiency generally appear in the first year of life. Affected infants may have severe developmental delay and involuntary writhing movements of the limbs. ** **由於無法合成多巴胺,AADC缺乏患者出生後即缺乏運動及智能發展,並出現不自主運動,藥物治療無效而且多半早期死亡。簡單來說AADC缺乏症是會造成兒童急迫性生命危害的一種罕見疾病。

The Hiew sisters may lose their lives anytime due to this rare disease, but their parents remain optimistic everyday! Since the Hiew sisters were diagnosed with this rare disease, the parents had tried to seek medical treatment from various doctors. Unfortunately, the doctor in Taiwan had advised them to be prepared that the sisters might lose their lives anytime as they had missed the best time to receive treatment. Even so, but the parents never gave up and continued to support them until their last breath. Both sisters can only depend on a specific brand of milk powder to survive since they were born. Both of them need to be on bed all the time. Sometimes they even experience laboured breathing, anaerobic etc. and the family members feel so sad looking at these two little girls suffering from the disease everyday. The Hiew sisters consuming on average one tin of milk powder every 3 days, which is about RM80 per tin. In other words, the milk powder for the sisters will cost the family at least RM800 per month on top of the monthly living expenses at about RM1500. The financial burden of the family became heavier and the parents eventually sought financial aid from Yayasan Nanyang Press last month as they can hardly afford it. The total collected funds for the Hiew sisters is RM13,000 to date. Yayasan Nanyang Press will be giving RM3000 to them every month in order to ease the financial burden of their medical and living expenses. Meanwhile, your generous donation support is also very much needed for the Hiew sisters.

罕見怪病隨時奪走兩姐妹性命,父母樂觀面對每一天! 姐妹倆在姐妹倆確症患上怪病後,四處奔波求醫,並在上個星期在台灣被醫生宣告姐妹倆已超過治療的黃金時機,醫生還讓父母兩人做好姐妹倆隨時會有生命危險的準備,雖然如此,委任父母者還是沒有放棄姐妹倆,還堅決陪孩子直到生命的最後一刻。 姐妹倆出世至今都無法使用任何事物,每天只能依靠特定的牛奶粉維持生命。 姐妹倆的症狀相似,都是必須長期臥床,而且會出現氣喘、缺氧、身體呈黑色或紫色狀態,換句話說,兩人每天都在跟病魔抗戰,讓親友們都心痛不已。 兩人所食用的牛奶粉,每罐大約RM80,兩人平均每3天就喝完一罐奶粉,換句話說兩人每月的奶粉錢就高達至少RM800,另外還有兩人每個月至少RM1500的生活費,讓家裡的經濟負擔越來越重。 邱嘉瑩和邱淑慧的父母在求助無門之下,在一個月前向南洋報業基金申請生活援助,至今共籌集1萬3000零吉。南洋報業基金決定在這個月起,以每月撥款3000零吉的方式資助他們那龐大醫藥費和生活開銷。同時也呼籲大眾踴躍捐款,助姐妹倆一臂之力。

Updates 7/3/2017

Hiew Jia Ying was admitted to hospital (Taiping hospital) 2 weeks ago and she was diagnosed with a rare disease that is difficult to be cured. While she is struggling to survive, let us support her together either mentally or financially.

Yayasan Nanyang Press (YNP) had started to raise funds for her and her sister (the late Hiew Zhi Qian) since 2015. Up-to-date we have collected RM34,515 for the sisters. YNP transferred RM3,000 per month for their living and medical expenses since November 2015 until Hiew Zhi Qian passed away in 2016. Since then, we transferred RM1,500 every month to support Hiew Jia Ying’s living expenses.

The current balance from the public funds collected for the sisters is RM3,000. This means, the balance of the fund collected for Jia Ying can only last for another 2 weeks. On top of that, her medical bill for recent hospitalisation will be additional bill on top of her regular expenses. Your kind contribution and support will be highly needed.



Updates 6/4/2016

Yayasan Nanyang Press expresses deep condolences for the death of Hiew Zhi Qian early today.

Yayasan Nanyang started to collect funds for the late Hiew Zhi Qian and her sister Hiew Jia Ying in November 2015 (total collected funds RM20,959) and giving RM3000 every month to them as living expenses since then. The balance of their collected funds now is RM 5,959, which is only sufficient for the expenses of the sister for 4 months.




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