Email received from
Elena Wong from Kuala Lumpur, Malaysia, about her daughter Emilie Choo
Dear Margarette :
I came across your CDC Support Group in the Website and I would like
to share my experience of my daughter who is diagnosed as a CDC
Syndrome child. Below is a profile of my daughter's condition and I
really hope you could provide me information on ways that I could
improve my daughter mentally & physically.
Everyday I pray to
Jesus Christ to help my daughter to be independent -- able to walk,
talk & eat by herself. Or the least give her a chance to be able
to walk. Sometimes, I pray for miracles for my daughter.
PROFILE
We have a joy and darling of the family: Emilie Choo who will be
exactly 10 years old come November 12th. The difference between her
and the other children of her age is that she has not grown in ratio
to her age, she has not learn to talk or speak in any way. She cannot
stand, neither can she crawl on flours, and she does not know how to
chew her food.
Emilie was born by
caesarian measuring: length 44 cm, head circumference 32cm and
weighing 5 lb 5 oz. According to the doctor, she was born with poor
muscle tone; with an appearance of a 'rag doll' when carried. She was
also born with a cleft pallate and the doctor also detected a slight
murmur in her heart.
She was admitted to
the University Hospital (Malaysia) on August 5,1991 (8 months old)for
fever and fits. She was discharged the next day. Again on Deceber 8
1991, she was aditted for the same problems:fever and fits. This time
she was admitted for about 11 days. The clinical features by the
doctor in attendence was dysmorphic features. Chromosome test was
performed and the result was 2N = 46 xx . The possibility was CRI DU
CHAT Syndrome. She was admitted again the following periods for the
same fever and fits symptoms
April 19, 1992 discharged April 21, 1992
May 15, 1992 discharged May 17, 1992
Oct 02, 1992 discharged Oct 20, 1992
Nov 15, 1992 discharged Nov 18, 1992
Nov 21, 1992 discharged Nov 24, 1992
July 20, 1993 discharged July 28, 1993
Since then she has grown stronger as she grew older and presently, her
fits comes once in a while and in short duration. she is growing out
of her fits as she grows older. As a precautionary measure she is on
Phenobarbitone 45mg night ever since.
Emilie's feet
are growing inwards and she
wears a specially tailored shoe and we put her on a supporting
trolley and train her to walk. However, when she is by herself
on the trolley, she will tend to walk backwards, but when aided
she can walk forward step by step. Her feet tend to bend
inwards and not straight. We hope that with the standing
fame we now have for her, it will help to straighten her feet
and correct her posture.
She is not able
to chew food -- so we have to give her liquid food, like
porridge. She has some teeth, seems like still milk teeth
and not in full. She is growing taller and heavier and we
find it diffculty to carry her to the toilet for bathing or
washing. When we take her out we put her in a wheel chair.
One thing which I feel sad is that she cannot focus and she tend
to move her head from side to side. Due to this, we are
unable to give her speech therapy.Appreciate any feedback or
recommendation from you.
What makes her
stand above all of us is her ability to hold herself during her
period of fits and even up to the present age, she does not cry
from discomfort or pain. She is not 10 years old. She love to
listen to music and songs from the radio and she would roll over
to it and enjoy sitting there and listening.
We are looking towards the future, dear visitors. Our only wish is to
see her able to stand if not walk. We sincerely appeal to any one who
know of any medical science and / or professional bodies that can help
Emilie, please contact us.
Appreciate any
feedback or recommendation from you.
Thank you and regards.
Elena Wong & Andrew Choo
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