Big head, bizarre head, head like a mushroom: These are among the many distasteful and insensitive remarks typically hurled at Hydrocephalus sufferers, specifically, these with extra liquid contained in the mind which causes the pinnacle to swell past regular.
Several mother and father of those particular youngsters have stated that acquaintances and even a few of their very own kinfolk had uttered phrases to insinuate that what occurred to their family members was the results of their very own transgressions.
Malaysian Hydrocephalus Patient Association president Azah Hana Ahmad Azahari stated many mother and father lamented such ridicule from the public.
“The notion of some members of the neighborhood upon coming throughout mother and father with their youngsters who’re affected by Hydrocephalus is that it’s retribution for a previous mistake or sin. This significantly impacts their feelings, and it should be stopped.
“If they’re Muslims, they need to settle for it as a take a look at from Allah, however most significantly, mother and father should search early remedy when their youngsters are detected with this illness,” she instructed Bernama not too long ago.
Azha Hana stated the affiliation was arrange on June 17, 2015, and had about 600 communities nationwide.
She stated the communities have been shaped as a platform or assist group to assist mother and father, families or Hydrocephalus sufferers morally and financially, in addition to by offering recommendation.
As a mom to a Hydrocephalus affected person herself, Azah Hana stated most families confronted monetary issues, particularly in financing the price of putting in a shunt, a particular tube that’s inserted within the mind to assist drain the cerebrospinal fluid and redirect it to a different location within the physique the place it may be reabsorbed.
According to her, the process prices between RM3,000 to RM8,000, relying on the kind of tube required.
Unseen challenges
Khairul Anuar Samsudin, 33, additionally admitted that he had heard folks ridiculing his youngest little one, Ilham Affan, 5, who was identified with Hydrocephalus from the age of 9 months. “A lady stated in Javanese throughout a rewang ceremony (neighborhood cooking ceremony) in Johor that my son’s head was ‘like a mushroom’.
“Much worse, her son, who was nonetheless younger, additionally stated the identical factor with out being reprimanded,” stated Khairul Anuwar, who works as an Islamic Affairs Assistant on the Negeri Sembilan Mufti Department.
He was aggrieved on the perspective of society, however was grateful as a result of his son’s situation didn’t have an effect on his nervous system and mind, and this allowed the youngest of two siblings to attend regular kindergarten in Seremban.
He additionally drew consideration to the truth that many have been unaware that Hydrocephalus sufferers wanted extra bills for garments, in addition to prices for the remedy and drugs, in addition to different wants corresponding to milk
“They can’t put on simply any T-shirt due to their somewhat massive head sizes. So, most of his shirts should have buttons on the entrance.”Some outfits such because the baju Melayu should be custom-made and that is a further monetary burden (for fogeys) that the public can’t see,” he stated.Nur Rabiatul Rosli, 13, who has suffered from Hydrocephalus since start, agreed saying that lots of her garments together with college uniforms had zips or buttons to permit her to slide them on simply.
The youngest of 4 siblings, who’s a pupil with particular wants at SM Miharja right here stated regardless of having a shunt put in from the age of six, she was grateful that she may go about her every day life like another little one.
“I can play, however I’ve to watch out and never be too boisterous as my head could be very heavy, so I can simply fall if am not cautious,” stated Nur Rabiatul, who spoke fluently throughout an interview by way of video name with Bernama.
Asked about her ambition, Nur Rabiatul, who solely started to stroll on the age of three, couldn’t preserve her composure and stated that she was conscious of the destiny of somebody along with her situation. She stated she dared not harbour lofty desires, other than doing her greatest in research.
The particular little one ended the dialog with Bernama with the message: “Parents or families with a toddler like me should settle for it as a take a look at from Allah.
“To fellow associates who’re like me (individuals with incapacity), we should keep in mind, that we’re much-loved”. – Bernama
