Newscut Name 姓名: Nurul Jalwa Binti Nor Fazizal
Age 年龄: 5 months old / 5个月
Condition 病情: Biliary atresia 胆道闭锁

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Article: Nanyang Siang Pau

Updates 28/9/2018

Hailing from Malacca, is a young girl named Nurul Jalwa, who was diagnosed with biliary atresia two months after birth. This is a type of congenital disorder that impedes the flow of bile from the liver to the intestines. The blockage, over time, causes liver cirrhosis. She started receiving treatment from Malacca General Hospital but because her condition started to worsen, she was transferred to Hospital Kuala Lumpur.

When Nurul Jalwa was 69 days old, she underwent a surgery called a Kasai Procedure, to relieve the blockage and allow bile to flow. However, her condition did not improve after the procedure. Her abdomen began to swell up as her liver function began to deteriorate. Later, she underwent a second surgery to separate the intestine that was attached to the liver, but this second procedure did not help alleviate her condition either. After multiple failed attempts for a cure, her only chance for a cure now is by doing a liver transplant. Subsequently, she was transferred from HKL to University Malaya Medical Centre.

After a detailed investigation, doctors conclude that Nurul’s mother is a strong candidate for liver donation. According to Mr Mudzaffaar, President of Biliary Atresia Malaysia Association (BAMA), UMMC lacks the necessary expertise and infrastructure for this procedure, so doctors are advising her to go to Max Super Specialty Hospital in India to perform the liver transplant. The main reason behind choosing this hospital for this procedure is because doctors there are extremely experienced in performing this procedure. Additionally, her budgeted medical bills is only around 40,000 USD (approximately RM166,000). The whole treatment includes a 3-month stay in the hospital. If this were to be done in a different country, hospital bills will surely skyrocket! After doing the surgery there, Nurul will be allowed to follow-up at UMMC.

Nurul’s father, Fazizal is a government servant with a monthly income of about RM2100. While her mother, Maslina, is a housewife. They have 4 children, namely Jannah (11 years old), Hanis (10 years old), Anas (5 years old) and the patient, Nurul Jalwa.

The exorbitant medical fees for this procedure puts an incredible burden on their family. With the help of the NGOBAMA, they’ve come to seek financial assistance from Yayasan Nanyang Press Medical Aid. The team of doctors at UMMC strongly advises Nurul to maintain a body weight of 5kg. However, over the past 3 months, her body weight has stagnated at 4.8kg. To make things worse, she had gotten a fever, bacterial infection and developed breathing difficulties.

As of the 13th of this month, her body weight has started to increase steadily. Today, her body has finally gone up to 5.58kg! The infection has already been resolved, so she has stopped taking antibiotics. Her fever has also subsided and she no longer needs to rely on breathing aids! We are hoping that UMMC will be able to make arrangements with the doctors in India, so she can quickly proceed with the liver transplant.

As of today, through the generosity of the public, Yayasan Nanyang Press Medical Aid has accumulated a sum of RM 49,682 for Nurul Jalwa’s cause. However, it is the Indian hospital’s policy that we pay 50% of the procedure’s total budgeted cost, which is USD20,000 (RM 82,990) as a deposit before they let Nurul be admitted. In order to let Nurul undergo the procedure smoothly in her best condition currently, so that she may have the highest chance of complete recovery, Yayasan Nanyang Press has decided to donate RM 43,000 to make up the difference for the deposit. At the moment, we still need to raise the other 50% of the total cost (approximately RM 80,000).

Nurul Jalwa is already doing her best, fighting her way through one obstacle after another. We hope that more generous members of the public, would be willing to help support this fund raising and give this little life a fighting chance!

来自马六甲的女童小嘉娃(Nurul Jalwa), 出世两个月后就被医生诊断患上胆道阻塞。这是一种先天疾病,将损害胆汁排泄功能,并导致肝硬化。她一开始是在马六甲政府;
医院接受治疗, 但因病情日益严重而被转介到吉隆坡政府医院(HKL)。

小嘉娃在出生后的第69天便接受了肝门空肠吻合手术(Kasai Procedure)好让胆汁可以流通。可是手术后她的病情并没有好转,肚子变得越发肿大、肝功能不断下降。。。为了分开她贴在肝脏的肠子,医生又为她进行了她人生中第二次手术, 无奈这项手术并没有让她因此康复。在百般努力无果后,院方断定小嘉娃必须尽快接受肝移植手术而将她从隆坡政府医院再转介至马大医院。

经过详细检验后,医生确认小嘉娃的母亲为她最适合的捐肝者。根据Mudzaffaar先生(BAMA主席)提供的资讯,马大医院缺乏实行这项手术的经验和所需要的设备,所以医生推荐小嘉娃到印度的Max Super Speciality Hospital进行肝移植手术。主要选择这间医院因为那里的肝移植手术医生经验非常丰富,而且医药费估计大约40,000美金(约RM166,000)。整个治疗过程长达3个月,如果到邻国接受类似手术,医药费一定会更加高!手术后嘉娃可以继续到马大医院复诊。

小嘉娃的父亲Fazizal是名公务员,每月净收入约RM2100。与她的母亲Maslina则是名家庭主妇,育有4个小孩,分别为Jannah(11岁),Hanis(10岁),Anas(5岁)及患病的Jalwa.

昂贵的手术费成了他们无法承受的负担,因此通过非政府组织Biliary atresia malaysia associations(BAMA)的协助下,向南洋报业基金申请医疗援助。PPUM的医疗团队坚持要求小嘉娃的体重必须在她被送往印度进行肝脏移植手术之前应达到5公斤。自过去三个月以来,她的体重一直保持在4.8公斤。此外,她也同时面对发烧,细菌感染和呼吸困难等问题。

直到本月13日,她的体重才开始上升。今天的体重终于增加至5.580kg!她之前面对菌感染感染的问题也解决了,所以不再需要服用抗菌素。此外,她的高烧也完全退了, 而且不再需要依靠仪器也可以自行呼吸!希望马大医院和印度的医生协调后可以尽快让她到印度进行肝移植手术。

截止今天为止, 慷慨解囊的大众们透过南洋报业基金总共捐了RM 49,682 的善款帮助小嘉娃。但在送她到印度入院之前,医院规定我们必须先汇了50%的手术抵押金USD20,000 (RM82,990)给医院。为了让小嘉娃可以顺利地在她最好的状态下及时接受肝移植手术以达到最高的痊愈率,南洋报业基金决定捐出RM43,000来补上还筹不足的手术抵押金。目前还需要筹目其余的50%手术与治疗费(大约八万马币)。

小嘉娃已经非常努力地排除了种种障碍与考验。希望各位善心人士愿意帮忙传发和支持筹款活动,给这小小的生命一个活下去的机会!

Updates 12/9/2018

According to Mr. Mudzaffaar (Chairman of BAMA), the Medical Team from PPUM insisted that baby Jalwa’s weight should reach 5kg before she is sent for liver transplant surgery in India. Jalwa’s weight had been maintaining at 4.8kg since the last 3 weeks. Besides, she was also having fever and breathing difficulties. Good news is her weight has finally increased to 5.16kg today! However, the doctor found early today that she has an infection. Hopefully the infection will be controlled after the application of antibiotics. As at today, she still needs oxygen equipment to support her breathing. Your kind support is always appreciated. We will keep you updated from time to time about baby Jalwa’s condition.

根据Mudzaffaar先生(BAMA主席)提供的资讯,PPUM的医疗团队坚持要求小嘉娃的体重必须在她被送往印度进行肝脏移植手术之前应达到5公斤。自过去3周以来,她的体重一直保持在4.8公斤。此外,她也同时面对发烧和呼吸困难等问题。 好消息是她今天的体重终于增加到5.16kg!然而,医生又发现她开始受细菌感染!希望服用抗生素后,一切将安好。截至今天,她仍然需要氧气设备来支持她的呼吸。 我们非常感谢您的支持。我们会不时更新有关小嘉娃病情的信息。

Updates 15/8/2018

Nurul Jalwa from Melaka is a 5 month old girl who is currently suffering from biliary atresia and a failed Kasai procedure. Biliary atresia is a congenital problem where the biliary system was underdeveloped thus impairing the bile excretory function. This has led to chronic accumulation of bile which is toxic to the liver and results in liver cirrhosis.

Kasai procedure operation was done at day 69 of her life but her condition did not improve and her liver function has shown some degree of impairment. The treatment for her current condition will be liver transplantation. Without a transplant further survival would not be possible.

UMMC referred Nurul to Max Super Speciality Hospital in India for liver transplantation, where they have a well established liver transplant centre for liver transplantation. The estimated cost for liver transplant is USD 40K (approximately RM160K).

Nurul’s father Fazizal works as a government servant, her mother Maslina is a housewife. She has 3 siblings who are Jannah (11 y/o), Hanis(10 y/o) and Anas (5 y/o).

Therefore, with the assistance of the Biliary Atresia Malaysia Association (BAMA), Nurul’s parents appeal for medical aid from Yayasan Nanyang Press and to raise funds from the public.

来自马六甲的女童Nurul Jalwa(5个月),出世后两个月就发现患上胆道阻塞,这是一种先天疾病,将损害胆汁排泄功能并导致肝硬化。因此到马六甲政府医院接受治疗。之后转介到HKL。女童在出生后第69天以进行了肝门空肠吻合手术(Kasai Procedure)以让胆汁流通。

但手术后女童的状况并没有好转,1个月后再进院,肚子肿大,而肝功能指数越见下降。HKL医生为他进行手术以分开贴在肝脏的肠子。但手术不成功。院方表示女童需要尽快接受肝脏移植手术,否则将有生命危险。并将女童转介至马大医院。女童的母亲是潜力捐赠者但需到印度医院检查确认。

马大医院的医生推荐Jawal到印度医院进行肝脏移植手术。到印度的Max Super Speciality Hospital进行手术的费用需40千美金(约160千马币),整个治疗过程长达3个月。

女童的父亲Fazizal是名公务员,每月净收入约RM2100。与太太Maslina(家庭主妇)育有4个小孩,分别是Jannah(11岁),Hanis(10岁),Anas(5岁)及患病的Jalwa.

昂贵的手术费成了他们无法承受的负担,因此通过非政府组织Biliary atresia malaysia associations(BAMA)的协助下,向南洋报业基金申请医疗援助。

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