28.2.11

'The Williams Families'

Minggu lalu berlalu dengan pantas. Banyak perkara yang perlu diuruskan. Dan terlalu banyak benda yang perlu difikirkan. Khamis petang kami ke hospital swasta di jalan ampang. Berat kaki dan berat hati hendak ke sana. Saya dan En Kaki Pancing dah bersedia, kami redha dengan segala keputusan yang bakal kami dengar.

We had the FISH Test done a week earlier, and the results came back with a positive diagnosis. Baby Iman was diagnosed with Williams Syndrome (WS).

Kami tenang apabila doktor menceritakan lebih terperinci mengenai WS. Berbanding 3 bulan lepas, apabila dia bertanya pada kami ’Pernah dengar William Syndrome?’. Itu soalan pertama dia tanya bila dia tengok Iman, sebelum dia buat echo dan ECG. Seumur hidup saya itu lah kali pertama saya dengan pasal WS. Tangan saya menggeletar bila saya goggle pasal WS di hp semasa menunggu nurse panggil untuk membuat pembayaran.

‘Williams syndrome is a genetic condition that is present at birth and can affect anyone. It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities. These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.


WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture. Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing. Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.


But there are major struggles as well. Many babies have life-threatening cardiovascular problems. Children with WS need costly and ongoing medical care, and early interventions (such as speech or occupational therapy) that may not be covered by insurance or state funding’


Common features of Williams syndrome include:


Characteristic facial appearance
Heart and blood vessel problems
Hypercalcemia (elevated blood calcium levels)
Low birth-weight / slow weight gain
Feeding problems
Irritability (colic during infancy)
Dental abnormalities
Kidney abnormalities
Hernias
Hyperacusis (sensitive hearing)
Musculoskeletal problems
Overly friendly (excessively social) personality
Developmental delay, learning disabilities and attention deficit disorder'


Kami bersyukur kerana dapat tahu lebih awal berbanding dengan sesetengah parents yang mempunyai anak WS. Kami bersyukur walau apa pun yang berlaku, kami percaya setiap anak itu ada rezekinya. Kami bersyukur kerana Allah menganugerahkan kami seorang anak yang cukup istimewa. Kami besyukur kerana Allah memberi amanah serta memilih kami untuk menjadi ibu dan ayah kepada Iman, menjaga Iman, memberi kasih sayang sepenuhnya kepada Iman.

Melalui Williams Syndrome Foundation, kami dapat berkenalan dengan parents lain yang mempunyai anak-anak WS dari serata dunia. Sebagai ahli baru dalam ‘Williams Syndrome Families’, ada banyak perkara yang saya perlu pelajari dari mereka.

I pray with all the parents of children with WS, please spread the word. There is still so much unknown about WS. Many doctors in my area had never heard of it. To some children, because of the heart defects and other defects caused from the lack of elastin, it is life threatening. So tell people about it. Educate doctors and nursing staff so no parent has to find out when it's too late’
- Nea Lea’s mother

17 comments:

  1. memang WS ni masih 'rare' among malaysians even among doctors.

    bersabar dgn dugaan ini, kerana ada hikmah disebaliknya....cuba tgk ada tak support group utk WS ni di malaysia..saya rasa takda.

    ReplyDelete
  2. mas, saya tak tahu nak tulis apa ..
    tak de ayat yg sesuai utk saya tuk saya fikirkan
    sayu rasa hati ..
    setiap yang berlaku ada hikmahnya

    ReplyDelete
  3. semoga sis tabah dan sabar dgn dugaan..
    sy setuju ayat sis setiap anak ada rezekinya..
    bila tahu awal insya Allah ada jalan untuk berusaha kn... sy doakan yg terbaik utk sis dan family.. semoga Allah permudahkan segalanya...

    ReplyDelete
  4. WS memang very rare
    saya penah jumpa pun sekali, masa keje kat nicu hospital selayang dulu. baby tu ada heart complication skali. tapi tak sempat nak follow up what happen to the baby sbb posting 2 bulan jer kat situ

    thanx for the info

    besar pahala kalian, seiring dgn pengorbanan membesarkan iman. semoga Allah permudahkan segalanya :)

    ReplyDelete
  5. akak, saya pun tak tau nak taip apa. sebak pulak rasanya. saya harap akak dan famili tabah dan kuat eh. insya-Allah, Allah Maha Kuasa.

    (^_^)V

    ReplyDelete
  6. DaddyZiyyad: Tak der support group khas untuk WS. Tapi support group untuk khas untuk penyakit2 yang 'rare' ni ada. So kami akan join yang group tu nanti. Thanks.

    ReplyDelete
  7. Izazi: Thanks puan. Syukur faiz dah pindah sini. Kalau tak, tak tau camner nak handle situasi macam ni.

    ReplyDelete
  8. Cik Fiza: Terima kasih atas doa dan sokongan. Kami amat-amat menghargainya.

    ReplyDelete
  9. DrHanie: terima kasih atas doa dan sokongan. saya teringin nak berjumpa parents yang ada anak WS di Malaysia. Nak berkongsi pengalaman. teringin sangat macam nak buat iklan kat sokabar jer :)

    ReplyDelete
  10. En_me: yer, begitew lah ceritanya..

    ReplyDelete
  11. Cekkeya: Thanks dik. berkat sokongan keluarga dan rakan-rakan termasuk rakan bloggers, insyaAllah, kami diberi kekuatan untuk menghadapi dugaan ini.

    ReplyDelete
  12. Hi! It's Mercedes. You left a comment on my Williams Syndrome site last week. :)

    I'm so pleased to meet you! There are so many of us who have children with Williams. You're not alone. If you have any questions, just ask. We've all been through it.

    ReplyDelete
  13. Assalamualaikum. Saya bz lately ni. Lama tak jenguk. Blog sendiri pun tak sempat nak jenguk sgt.
    Sayu hati baca...semoga tabah n sentiasa sabar ye.
    Saya sentiasa doakan yg terbaik.

    ReplyDelete
  14. Mercedes, thanks for visiting my blog :) and millions thanks for this new frienship. I hope that I can be as strong as you.

    ReplyDelete
  15. DrSinga; yes... Iman strong...ibu dia yang tak berapa nak strong nih...

    ReplyDelete