My baby girl was diagnosed with neurodevelopmental disorder Williams Syndrome when she was 7.5 months. She is now approaching 22 months.
What is Williams Syndrome? According to Wikipedia, it is “a rare neurodevelopmental disorder caused by a deletion of about 26 genes from the long arm of chromosome 7. It is characterised by a distinctive, 'elfin' facial appearance, along with a low nasal bridge; an unusually cheerful demeanour and ease with strangers; developmental delay coupled with strong language skills; and cardiovascular problems, such as supravalvular aortic stenosis and transient hypercalcaemia.”
It has not been an easy journey knowing her condition, and there are a lot of worries and fears. I can't deny that we actually worried so much to the point of searching for a suitable school for when she turns seven years old.
Yesterday night we saw a leap of progress and my family was so excited as my baby started walking when we held her by one hand. God heard my prayers and I am too ecstatic.
Last night when I saw her walk I started to SMS relatives and friends who are concerned.
I had prayed for her to walk and I really couldn't wait for that day. So, when she did, it made me cry tears of happiness.
Her achievement wasn't a one-day success.
To all the mothers out there with special children, my heart goes out to you. We all need to be patient. My girl has gone to many doctors, midwives, physiotherapists, occupational therapists, speech therapists, audiologists, cardiologists, genetists - clinic after clinic and hospital. The support from family members, friends and society is fairly important to provide us with strength and confidence in handling our children.
I am glad that we found out early about her condition and worked it out.
Malaysia now has its first “Child Development Centre” in Hospital Universiti Kebangsaan Malaysia (HUKM), Cheras, and it is equipped with specialists for special children. You may be flooded with lots of doctor's appointments initially but you will go with the flow once you see progressive milestones in your child's development.
We have limited support for Williams Syndrome in our country, and I think networking with other parents will also be a great source of support and encouragement to bring up a Williams Syndrome child.
If you have a Williams Syndrome child, don't give up. I am confident that you will see the fun, loving character in your special children, just like me.
My son always has fun with his sister, as they imitate each other and at times she actually teaches him to be brave.
I am always more than happy to offer support to parents of other Williams Syndrome children.
Jessie Koo
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