One of our MOW Food Bank family recipent, Fazilah Mohd Yusof's youngest daughter has been hospitalised at the pediatric ward in KL GH for almost 10 days with a very bad lung infection.
Siti Nurmaisara, 9 years old, suffers from cystic fibrosis which is a progressive, lifelong condition, in which the glands that produce mucus, sweat and intestinal secretions do not function properly. Thick mucus accumulates in the lungs, leading to breathing difficulty and infection. It also impairs digestion, which makes it difficult for Nurmaisara to get the necessary nutrients to grow. There is no cure for cystic fibrosis, but supportive treatments are available to help improve quality of life.
I visited Nurmaisara at the ward this afternoon. I brought chicken rice lunch for the whole family as her other two daughters were also at the hospital since its Saturday and they are not in school. According to Fazilah, Nurmaisara is recovering from the lung infection but is still getting antibiotic treatment intravenously through her chest.
Fazilah herself looks exhausted from the long hours caring for her daughter, including sleeping at the hospital at night. She has two other school-going children whom she needs to care for, including cooking their meals. She does not have a regular paying job as she has to look after Nurmaisara, almost full-time. Her eldest daughter in Form 5 relieves the mother in the hospital on some nights, so that Fazilah is able to rest. The bus fare from her house to the hospital is RM2.50 one way. So between the two of them, bus fare works out to RM10-RM20 per day, depending on how many trips they make to the hospital. Although the transport cost puts additional stress on the RM400 she gets from the government social welfare in lieu of the youngest daughter's illness, this is just short term.
The more pressing issue is the cost to care for Nurmaisara long term. Because of her impaired digestive system, most of what she consumes pass through without much being absorbed, which means she goes to the toilet about 10-12 times a day!!! Doctor has prescribed a special milk called Peptamen Junior which helps in cases of malabsorption. She is currently being fed Peptamen in the hospital, 4 times a day with 4 scoops of milk powder in each serving. With this, Nurmaisara only goes to the toilet once a day.
Fazilah is now worried about how she is going to sustain her daughter on Peptamen once she is discharged from the hospital. A quick check at a pharmacy in Damansara Uptown indicated that the small tin above cost RM78 (I only saw this at the pharmacy. Not sure if there is a Junior version). With her current consumption, it will be almost a tin a week, or about RM300 a month.
If you or your friends know of anyone in Nestle from whom we can buy the milk at a discounted price, or if you would like to help Fazilah by donating Peptamen, regardless of how many tins, please contact June at trccpenchala@gmail.com or call Kim at 012-3036019.
On behalf of Fazilah and Nurmaisara, we would like to say a BIG THANK YOU in advance for your generous support.
Posted by Kim
Pictures courtesy of Kim
