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William Syndrome in Malaysia

My baby girl has been diagnosed with William Syndrome when she is 7.5 months, and now she is approaching 22 months. It has not been an easy journey knowing her condition, and there is lots worries and fears and yes, I can't deny that we actually worries until to the extend of finding suitable school for her when she is 7 years old.
Yesterday night is a leap of progress and family's leap of excitement, my baby can now walk holding her one hand. God hears my prayer and I am too ecstatic and start to sms relative and friends who concerned. I really can't wait to see her walk all these while and she did it.... tears of happiness indeed. ;)

Her achievement wasn't a one day success. To all the mothers out there with special children, I heard you and we need to be patient. My girl has gone to many doctors, midwife, physio therapist, occupational therapist, speech therapist, audiologist, cardiologist, genetist, clinics after clinics and hospitals. Not forgetting the support from family members and friends and society is fairly important to provide us with strength and confidence in handling our children.

I am glad we had to know of her condition early and work it out. What is William Syndrome? From Wikipedia, "is a rare neurodevelopmental disorder caused by a deletion of about 26 genes from the long arm of chromosome 7.[1] It is characterized by a distinctive, "elfin" facial appearance, along with a low nasal bridge; an unusually cheerful demeanor and ease with strangers; developmental delay coupled with strong language skills; and cardiovascular problems, such as supravalvular aortic stenosis and transient hypercalcaemia."

Malaysia has got our first "Child Development Centre" in HUKM, Cheras and they are equipped with specialist for special children. You may be flooded with lots of doctors appointment initially but you will go along with the flows once you see progressive milestone in your child. We have limited support for William Syndrome in the country, and I think parents contact will be the source of support and encouragement to bring up a William Syndrome Child.

Thus, we should not give up, and I am confident to say that you will see the fun, loving character in your special children, just like me. My son always have fun with his sister, as they imitating each other and at times she actually taught him how to be brave. I am always more than happy to support if you need some sharing in William Syndrome.

I had this article featured at PARENTHOTS @ THE STAR

I am thankful that they are associations and supporting parent who come forward and share their thoughts and assistance.
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  1. Keep up what u've been doing for her all this while. I'm sure she'll be fine real soon. God bless.

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  2. Thanks, yes, I do believe in miracles, and I am enjoying every bits of the miracles April brings to our life. She brings hope and cheers to the family. Can't wait for yours thou. ;)

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  3. Hi Jessie,

    My 1 yr tot is diagnosed with WS when he was 6 mos. Ever since then, i keep searching for other parents of WS kids in Malaysia. Lucky me found your blog today. last week, we had our 1st WS families' gathering. Two families came. There are also another 2 families contected me via emial recently. Including you and me, there is about 6 families altogether. Our next gathering will be for Hari Raya. Hoping that you can join us. Kindly read my entry on our 1st gathering http://twoplusoneandmore.blogspot.com/2011/08/perjumpaan-keluarga-williams-syndrome.html

    take care.

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  4. Hi Ayin,

    Its my pleasure to meet up. I would like to get in touch with you closely in setting up the parent support group. I will have a slot in a magazine coming December and would like to make it happen. God heard my praying and he leads me to you. My FB Jessie Koo - jessie.koo@live.com.

    I will definitely make it during Raya, any date in particular?

    Cheers,
    Jessie

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  5. hi jessie & ayin.

    Tq for sharing all this in your blog. I have been looking around to be with the parents of WS.

    I do have one WS daughter. She is almost 4 years now. Still unable to walk & to talk.

    I am a working mother. I guess this is a good chance for me to let her mingle around with those who really understand her.

    Looking forward to gather around, together with all great mothers of WS.

    Shima

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  8. Thank you so much for sharing. I never knew about WS until I came across your blog.

    God bless you and your family.

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