描述
【Crowdfunding Case No: 1088】
– Help Seeker’s Information –
✅ Heng Jie En (10 y/o, girl with PKAN)
Heng Jie En (10y/o) was once a healthy and ordinary child. However, at the age of almost 7, unusual changes began to appear in her daily behavior. Her gait became unsteady, her hands and feet would sometimes twitch involuntarily, and even stiff postures would develop. Concerned about her daughter’s condition, her mother, Ms Kok, quickly sought help from various doctors. Finally, it was only discovered Jie En was suffering from a rare disease called PKAN (Pantothenate Kinase-Associated Neurodegeneration).
However, when they decided to proceed with advanced treatment, the implementation of the MCO disrupted everything. The doctor who had been consistently monitoring Jie En’s condition was no longer in practice due to the restrictions. Moreover, the various rules and limitations of the MCO caused delays in her treatment, leading to a significant worsening of her condition. Now, Jie En has lost her basic ability to move, and has developed spinal nerve issues, rendering her unable to support her body and leaving her confined to lying down for long periods. Additionally, she frequently experiences seizures and spasms, which take time to subside after each episode.
Due to the constant need to care for her daughter at home, Ms Kok has no extra time to work and support the family. The family relies solely on her husband’s modest income as a driver to make ends meet. Furthermore, they frequently need to travel back and forth to Johor for Jie En’s follow-up consultations and treatments. Over time, their family savings have gradually been depleted. With no other options left, she finally decided to entrust us to raise the following expenses from the public: –
✅ Transport Expenses (RM150/month)
RM150 x 6 = RM900
✅ Medical Expenses (RM300/month)
RM300 x 6 = RM1800
✅ Diapers & Milk Formula (RM1280/month)
RM1280 x 6 = RM7680
✅ Water & Electricity Expenses (RM300/month)
RM300 x 6 = RM1800
Total: RM12180
If you’re keen to donate for this case, you may refer to our fundraising platform👇🏻
✅ CIMB Bank : 8010950150
✅ Bank Account Name : Persatuan Kebajikan Cahaya Harapan Kuala Lumpur
Please contact us to request for donation receipt, all donations will be recorded for calculation purpose, thank you❤️
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【众筹个案编号：1088】
— 求助者资料 —
✅ 王洁恩 （10岁，PKAN患者小女孩）
王洁恩小妹妹，今年10岁，原本是一位健康平常的小女孩。然而，在差不多7岁期间，她的日常举止开始出现了异状。她的步态开始不稳定，手脚有时无意间会抽动，甚至会演变成僵硬的姿态。当时，母亲郭女士看到女儿出现如此罕见的病症，于是赶紧带她求助不同的医生，到最终才发现她患上了罕见的疾病 – PKAN（神经退行性疾病）。
然而天意弄人，在决定继续深部治疗的过程中，却出现了MCO管制令，而一直在跟进洁恩病情的医生也因此而没有继续执业了。除此之外，由于MCO的各种条规和限制，洁恩的病况难免也因此而被耽误，导致后来的病况越来越严重。如今，洁恩已经没有基本的行动能力，不能正常大小便，脊椎神经也出现了问题，无法支撑身体，只能长期躺着。此外，洁恩还时不时会出现癫痫和抽搐，一旦发作了，需要过了一段时间才能平缓。因此，各种各样的症状属实让人感到越来越担忧。
由于一直需要照顾在家的女儿，母亲郭女士根本无法抽出多余的时间出来工作维生，仅仅只能靠丈夫的司机微薄收入来维持。此外，他们每月还需要经常载女儿来回柔佛进行复诊或治疗。因此长期以来，家里的积蓄已经逐渐被消耗。最终，在各种巨大的药物开销和生活开销逐渐被消耗的情况下，她感到无比的压力和难过，唯有委托我们向大众招募以下费用：-
✅ 交通费用 （RM150/月）
RM150 x 6 = RM900
✅ 医药费用 （RM300/月）
RM300 x 6 = RM1800
✅ 尿片&奶粉 （RM1280/月）
RM1280 x 6 = RM7680
✅ 水电费 （RM300/月）
RM300 x 6 = RM1800
总共：RM12180
欲捐款的民众，可透过以下筹款平台👇🏻
✅CIMB Bank : 8010950150
✅Donation Account : Persatuan Kebajikan Cahaya Harapan Kuala Lumpur
请完成捐助的善心人士联系我们以获取捐款收据，每笔善款都将被记录在册作为统计用途，感恩❤️
