| The medical term used is "Intellectually Challenged
or Intellectually Disabled. Cindy-Lee has Angelmans Syndrome. This is a
syndrome that was discovered by Mr Harry Angelman in about the 1960's. Only in
the 80's has there been any information about this syndrome. It is quiet rare
and only 1 in every 20 000 to 30 000 children are born with this syndrome. What
actually happens is: While the baby is growing inside of the mother's womb,
there is a tiny deletion that occurs on one of the 15th pair of chromosomes.
This tiny deletion has such a great impact on the child's development and
creates a speech impediment that renders them speechless and some children only
develop a few words through-out there whole lifetime. This is quiet a serious impediment
because speech is our way of communicating with the world. There are other
forms of communication but often they are difficult for these children to
grasp. Some other common symptoms are: sleep disorders, fascination with
water, possible squinting of eyes and the most common is:
Constant smiling or laughing.
We only discovered that Cindy-Lee has Angelmans
Syndrome about 1 year ago. This happened because we wanted to possibly have
another baby and ended up going for genetic testing. Through a series of tests,
it was discovered that Cindy-Lee has Angelmans Syndrome. Before then, we just
knew that she was disabled, but had no answers to our questions. Now that we
know, it makes life much more easier to understand her and what her needs are.
She has come a long way
over the years and is a very brave and courageous young lady. When Cindy-Lee
was about 4 years old she was diagnosed with epilepsy. She had many seizures
and many a bump on her head where she fell when she lost control of her body.
She was put on an anti epileptic drug for about 8 years and we regularly prayed
for God to heal her. We took her to church and the pastor would anoint her with
oil and pray for her. One day she just stopped having seizures. A miracle
happened and Cindy-Lee was healed of epilepsy. She has not yet had another seizure.
Two years ago Cindy-Lee was diagnosed with a back
problem called Scoliosis. This is a curved spine. Cindy-Lee has not 1 but 2
curves in her spine. It is curved at about 45 degrees and we trusted
God to heal her. We were told that if her spine continues to grow skew then she
could end up in a wheelchair. The last x-ray she received was January [2003]
this year
and we had another miracle. Cindy-Lee's spine has stopped growing, therefore
no more curving and she can now walk relatively comfortably.
We
live in Cape Town and Cindy-Lee was living in a state institution for 10 years.
The state insitution closed down the children's ward, and I had to find another
option for my daughter. The best solution was a group home where Cindy-Lee could
receive the best care and reach her full potential. Cindy-Lee cannot speak and needs help with
dressing, feeding and to be taken to the toilet. This means a 24 hour care
and supervision which is very costly. As at 2003 the monthly fees caring for
an individual is R2 800.
What we do know for a fact is that Cindy-Lee
is very happy to be in her enviroment at the group home. We love her
very much and miss her each day she is not with us, but we understand that she
also has her own challenges to reach in her own way and at her own
time.
We wish her
God's Richest Blessing each day.
Love Mom
and Gary".
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