Ridiculed for physical abnormality
KUALA LUMPUR: “Big head, weird head, head like a mushroom” – these are among the distasteful and insensitive remarks often hurled at Hydrocephalus patients, namely, those with excess liquid in the brain which forces the head to swell beyond normal.
Several parents of these special children have conceded that acquaintances and even some of their own relatives have insinuated that what occurred to their loved ones were a result of their own previous transgressions.
Malaysian Hydrocephalus Patient Association president Azah Hana Ahmad Azahari said many parents lamented such ridicule from the public.
Azha Hana said the association was set up on June 17, 2015, and it has about 600 communities nationwide.
She said the communities were formed as a platform or support group to help parents, families or Hydrocephalus patients morally and financially, as well as to provide advice.
As a mother to a Hydrocephalus patient herself, Azah Hana said most families faced financial problems, especially in terms of financing the cost of installing a shunt, a special tube that is inserted in the brain to help drain the cerebrospinal fluid and redirect it to another location in the body where it can be reabsorbed.
According to her, the procedure costs between RM3,000 and RM8,000, depending on the type of tube.
Meanwhile, Khairul Anuar Samsudin, 33, also admitted that he had personally heard people ridiculing his youngest child, Ilham Affan, five, who was confirmed to be suffering from Hydrocephalus at the age of nine months.
Nur Rabiatul Rosli, 13, who has suffered from Hydrocephalus since birth, conceded to the fact and said many of her clothes, including school uniforms, had zips or buttons to allow them to be worn more easily.
Nur Rabiatul, who is the youngest of four siblings and is a student with special needs at Sekolah Menengah Kebangsaan Miharja here, said despite having a shunt installed from the age of six, she is thankful that she can manage on her own and go about her daily life like any other child.