Weblog OKU 2

This blog are use both English language and Malays langauge. Anything issues about disabled people can be disscused here. This Blog also known as WEBLOG OKU. Blogger 1 January 2007

 
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Sindrom Bardet Biedyl ragut keceriaan empat beradik
Thursday, January 11, 2007
Utusan Malaysia, 10 Januari 2007

Oleh KAMARUDIN HAMZAH

Empat anak pasangan Ismail Udin dan Mik Tom Hussin yang mengidap sindrom Bardet Biedyl hanya mampu menghabiskan sebahagian besar kehidupan di rumah mereka sahaja di Penempatan Program Rakyat Termiskin Kampung Beting Lintang, Besut, Terengganu.

SETIAP pasangan suami isteri sentiasa mengharapkan zuriat yang dilahirkan membesar dengan sihat dan comel sekali gus menjadi pengikat kasih sayang dalam rumah tangga.

Kebanyakan mereka tidak kisah sama ada cahaya mata itu anak lelaki atau perempuan kerana apa yang sebenarnya diinginkan ialah kehadiran anak akan menyeri kehidupan berkeluarga.

Ibu bapa juga tidak pernah menganggap kehadiran anak mengundang masalah, walaupun kehidupan mereka sendiri ibarat `kais pagi makan pagi’ dan sesekali terpaksa mengikat perut untuk meneruskan kehidupan seharian.

Suara tangisan, tawa dan keletah anak-anak pastinya dapat menghilangkan keletihan setelah seharian berkerja dan menjadi penawar kepada masalah yang dihadapi. Sebenarnya, tidak keterlaluan jika dikatakan jauh di sudut hati ibu bapa menyimpan hasrat agar suatu hari nanti mereka tidak lagi perlu bertungkus lumus bekerja menyara keluarga, sebaliknya tugas itu akan lebih ringan apabila anak-anak meningkat dewasa.

Namun, bagi pasangan Ismail Udin, 61 dan Mik Tom Hussin, 56, dari Kampung Beting Lintang, Besut, Terengganu, harapan sedemikian tidak mungkin menjadi kenyataan, sebaliknya mereka terus menggalas penderitaan apabila empat daripada tujuh anak mereka disahkan menghidap Sindrom Bardet Biedyl.

Empat anak mereka yang menghidap sindrom itu ialah anak keempat, Sulaini, 26, diikuti oleh Azmi, 25, Yah, 22, dan yang bongsu, Mohd Solihin, 19, tidak mampu melakukan apa-apa kecuali berkurung di dalam rumah.

Sejak 26 tahun lalu, pasangan ini tidak pernah merungut walaupun terpaksa menanggung kesusahan membesarkan anak-anak, lebih-lebih lagi dalam kepayahan hidup yang dihimpit kemiskinan.

Sindrom tersebut menyebabkan anak-anak pasangan itu menghadapi masalah penglihatan, fikiran lembab, pendek, kegemukan dan mempunyai risiko penyakit darah tinggi, buah pinggang dan kencing manis.

Selain itu, sindrom yang berpunca daripada kerosakan genetik yang diturunkan daripada kedua ibu bapa, membuatkan kempat-empat anak pasangan itu mempunyai jari tangan dan kaki berlebihan.

Kesemua anak pasangan ini hilang penglihatan semasa masih bersekolah rendah dan tidak dapat menghabiskan persekolahan serta menikmati kegembiraan seperti kanak-kanak lain.

Sulaini didapati amat kurang bercakap, hilang penglihatan sejak darjah dua dan mempunyai enam jari tangan kanan serta di kedua-dua belah kakinya.

Selain masalah kegemukan dan menghidap darah tinggi, anak gadis ini juga menghadapi gangguan kedatangan haid yang tidak menentu. Kini dia sudah tidak datang haid hampir setahun lamanya.

Pembedahan

Adiknya, Azmi pula, walaupun agak petah bercakap tetapi menghadapi masalah penglihatan sejak berumur 12 tahun dan kecacatan jari tangan serta kaki yang sama dengan Sulaini.

Dia juga dikesan menghidap paru-paru berair dan ketika berusia 17 tahun terpaksa menjalani pembedahan di bahagian rusuk kirinya bagi mengeluarkan cecair dan nanah yang terkumpul di bahagian itu.

Anak keenam pasangan itu, Yah, juga mempunyai kecacatan di tangan dan kaki sama seperti abang dan kakaknya serta mengidap darah tinggi, kencing manis dan sering mengalami masalah kekejangan dari paras lutut ke bawah.

Manakala Mohd. Solihin, bersikap sama dengan kakaknya yang enggan bercakap dan mengalami kecacatan pada kakinya yang mempunyai enam jari. Dia juga kini mengalami masalah sakit semasa membuang air kecil.

Penglihatan yang terhad menyebabkan Sulaini dan Mohd. Solihin banyak menghabiskan masa mereka di dalam rumah, manakala Azmi dan Yah sekali- sekala keluar berjalan mundar mandir di sekitar rumah mereka dan jiran terdekat.

Walaupun masing-masing menerima bantuan bulanan daripada Jabatan Kebajikan Masyarakat (JKM) sebanyak RM60 setiap seorang sejak tiga tahun lalu, jumlah itu kini dirasakan tidak mencukupi berikutan perbelanjaan yang kian meningkat.

Begitupun, pasangan warga emas itu ternyata begitu gigih mengharungi kehidupan bersama empat anaknya itu walaupun dihimpit kemiskinan dan hanya bekerja menanam sayur di Penempatan Program Pembangunan Rakyat Termiskin (PPRT) di Kampung Beting Lintang, di Besut.

Mik Tom mengakui walaupun kehidupan mereka agak susah namun dia dan suami reda dengan apa yang ditentukan Ilahi kerana percaya ramai lagi insan yang ditimpa masalah lebih besar daripada keluarganya.

“Cuma yang diharapkan agar ada pihak yang sudi membantu meringankan beban yang kami tanggung lebih-lebih lagi usia kami semakin lanjut dan kudrat sudah berkurang,” keluhnya.

Pendapatan pasangan itu hasil bertanam sayur di tanah yang disediakan oleh Jabatan Pertanian berhampiran penempatan itu tidak seberapa dan ada kalanya dia serta suami terpaksa mengikat perut untuk berbelanja sehari-hari.

“Walaupun mereka mengalami kecacatan namun perut tetap perlu diisi setiap hari dan kalau tidak ada kerja susahlah kami nak menanggung kehidupan sebegini tambahan pula keadaan sekarang semuanya mahal,” ujarnya sayu.

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Dari Penulis/ Owner Weblog OKU 2
Assalamualaikum...

Weblog ini diwujudkan untuk mengumpulkan sebanyak mungkin maklumat-maklumat berkenaan OKU.

Ia merupakan kesinambungan dari weblog oku 1 iaitu Anything About Disabled People.

Penulis/ owner of this blog adalah seorang OKU yang terlibat dalam kemalangan jalanraya pada Ogos 1992 di lebuhraya Paloh Inai, Kuantan, Pahang.

Itulah serba sedikit mengenai biodata penulis/ owner blog.

Wassallam...

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1 January 2007
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40 Reasons why you should join AGLOCO

1. You can make money safely, legitimately, and easily.

2. It takes maybe three minutes to join.

3. You need nothing more than a working computer connected to the Internet.

4. You don't have to enter any sensitive information to join.

5. You don't have to buy anything to join.

6. You don't have to buy anything ever once you are a member.

7. It's easy to cancel if you don't want to be a member any more.

8. You'll only download a small free toolbar that won't install anything else on your computer, hog its memory, or read your keystrokes.

9. You'll make the same amount of money even if you never click on anything.

10. AGLOCO is the real deal, not some little scam. A good number of notable entrepreneurs are backing it. A Google search with keyword "agloco" will net you 1 million pages and counting.

11. Very important: AGLOCO's business model has been tried before and proven to work. In fact, AGLOCO's predecessor paid out over $120 million to its members (this is what finally convinced me).

12. You can dramatically increase your income by referring other people to AGLOCO, because...

13. ...AGLOCO pays you a portion of the surf money earned by those you referred up to 5 levels below you. So...

14. You can recruit your friends and all make money together when you help them get referrals. Thus,

15. The sooner you sign up, the more folks will come to you for info and the more likely it is that you will be the original seed of a large referral network in your community.

16. You never have to read emails from people you don't know.

17. You'll never be asked to send emails to people you don't know.

18. You don't have to change anything you normally do on the Internet. You surf, AGLOCO pays.

19. AGLOCO's revenue source is genuine: a Viewbar members use that shows targeted advertisements based on your surf history, with the money paid to advertise going back to the members. That's not magic; that's common sense.

20. The Viewbar software you will download will not invade your privacy; it simply looks for keywords on the pages you view in order to show related ads.

21. The Viewbar is maybe the size of your taskbar at the bottom of your screen - in other words, it's small and won't interfere with your browsing experience at all.

22. AGLOCO has a thorough privacy policy that explicitly guarantees personal information will never be sold or given away.

23. In fact, AGLOCO has not one but three agreements every member must agree to. The bases are covered.

24. AGLOCO has a CPO - Chief Privacy Officer - whose responsibility is to make sure your privacy is never violated. His name is Ray Everett-Church, and he has more experience protecting privacy than probably anyone else on the planet.

25. AGLOCO doesn't play; anybody providing fake information, signing up twice, or otherwise trying to cheat the system will be detected by AGLOCO's anti-hacking instruments. This is an honest enterprise through and through.

26. By signing up, you support the company that will change Internet advertising for the better.

27. By signing up, you get to own a piece of the company that will change Internet advertising for the better. AGLOCO belongs to its members, which is to say that...

28. ...you will own stock (more if you refer people) in a company that is likely to become huge and thus your stock will be worth something awesome when AGLOCO goes public on the London Stock Exchange.

29. You will likely find that other AGLOCO members, especially now in the early stages of AGLOCO, are some of the Web's savviest users and developers, and you can learn a bunch from them.

30. You get to be on the cutting edge of World Wide Webware development, which means that as AGLOCO grows, its members will benefit from...

31. ...discounts when members buy from companies affiliated with AGLOCO;

32. ...possible help with spyware/antivirus protection (remember, everyone from Fortune 500 companies to millions of users will all benefit from a better browsing experience);

33. ...community forums where members can meet and discuss not just stuff, but ways and member-based projects to make AGLOCO better (it is our company).

34. Our company is in good hands. AGLOCO pays 10% of its revenues to Infomediary Services Corporation (ISC), which is simply the management company that is responsible for managing AGLOCO. The other 90% of the revenue belongs to us. This 10% will attract the designing talent needed to make AGLOCO great. The corresponding 10% of AGLOCO's shares go to a foundation dedicated to providing every human being on Earth with Internet access.

35. AGLOCO's management team will not get stock in AGLOCO. This ensures that those in positions of high responsibility don't hijack the company.

36. Though circumstances will vary, you can get paid and earn shares no matter where on Earth you live.

37. If you choose, you can donate your earnings and shares to the charity of your choice.

38. If you get involved in referring more members, you might be able to quit your day job and actually spend time at home, with your family, on vacation, wherever - and still make money.

39. If AGLOCO fails, you won't lose any money because you paid none in the first place.

40. AGLOCO ain't gonna fail. The last time such an opportunity existed, people made over $120 million in under 2 years, when far less people had Internet access and conditions weren't yet right for such a company to go public. Now, with record spending on advertising and calls from all sides for less irrelevant advertising and a better business/customer connection, the world is more than ready for an economic network that gives back to its users.

Now, if you aren't yet a member, after everything I just told you, you're not going to go and sign up?

Author: Michael H. Lewis

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