What
is Cornelia de Lange Syndrome? CdLS
is thought to be genetic in nature and
like other syndrome's individuals affected
with it tend to resemble each other. Common
characteristics include slow
growth, small stature, microcephaly, excessive
body hair, upper limb defects, heart
defects, gastroesophageal reflux
and developmental delays. Facial
features include eyebrows that meet
over the nose, upturned nose and
thin, downturned lips....
Learn more about Cornelia De lange
Syndrome Dedicated to
My Father(Tyler's Paw Paw)
I
found these poem's on the web somewhere, I
don't know who wrote them. I would to
share them with you. I hope you enjoy them!
To
Each His Own
"
Heaven's Very Special Child"
Welcome to Tyler's Page
We are so honored, we won our first award:
This page is about my nephew named, Tyler
Tyler was born on March 30, 1994...
Tyler is my brothers first born...
My brother and sister n law had tried
having a baby for 9 years...During the 9 years, they had
miscarried twice...Then the wonderful news that
they were going to have Tyler...Tyler is a special
child...A gift from God!
Tyler was born with Cornelia De lange Syndrome....
Tyler was 3 months old when we found out
he had CdLS. Tyler had quit breathing one
one night at his house. My brother, (Tyler's Daddy)
called 911...In the meantime, Tyler's Mother was
trying to give Tyler CPR. By the time help
came Tyler had turned purple. They didn't think he would
make it to the hospital. He did make there, but
the doctor's did not think he would make it
through the night. That's when Tyler showed
what a fighter he was. Tyler had already been
diagnosed with reflux. While in the hospital
they suspected something was wrong, they
did alot of genetic tests. And decided that
Tyler had CdLS. They said he would not live
long. Tyler had a tube put in his stomach
at 3 months old, to feed him. The first year
Tyler was in and out of the hospital from
complications from CdLS.
Today, Tyler has got brain damage from that
terrifying night. Tyler is 5 years old now.
Tyler goes to Therapy twice a week, and has
teachers that come to his house for his schooling.
Tyler is improving everyday.
Tyler has brought sunshine into
everyone's heart that see's him...He is truly
an angel from Heaven...
He showed everyone he was a fighter...Tyler
hasn't learned to walk yet...He is just
beginning to say a few words...but
he can let you know what he wants....
He loves to listen to Country Music,
and his favorite singer is Shania...
Tyler is now a big brother...
He has 2 brothers - Chad and Shayne...
Get Your Graphics Here
HunnyBee's
~Author Unknown~
§»¤«§:§»¤«§:§»¤«§:
I cannot change the way I am,
I never really try,
God made me different and unique,
I never ask him why.
§»¤«§:
If I appear peculiar,
There's nothing I can do,
You must accept me as I am,
As I've accepted you.
§»¤«§:
God made a casting of each life,
Then threw the mold away,
Each child is different from the rest,
Unlike as night from day.
§»¤«§:
So often we will criticize,
The things that others do,
But, do you know, they do not think,
The same as me and you.
§»¤«§:
So God in all his wisdom,
Who knows us all by name,
He didn't want us to be bored,
That's why we're not the same.
A meeting was held quite far from earth,
" It's time again for another birth".
Said the Angel to the Lord above.
This child will need much love,
His progress may be very slow.
Accomplishments he may not show.
And he'll require extra care, from the
Folks he meets down there.
He may not run, laugh, or play.
His thoughts may seem quite far away.
In many ways he won't adapt,
And he'll be known as handicapped.
So let's be careful where he's sent,
We want his life to be content.
Please Lord, find the parents who
Will do a special job for you.
They'll not realize right away
The leading role they're asked to play.
But with this child sent from above,
Comes stronger faith, and richer love.
And soon they'll know the privileges given,
In caring for thier gift from heaven.
Their precious charge, so meek and mild,
Is "HEAVEN'S VERY SPECIAL CHILD."
~~~Author Unknown~~~
We would love to hear from you.
When you get through looking at Tyler's Page,
be sure and sign his guestbook...
This CdLS Web Ring site is owned by Tyler's Aunt. Want to join the CdLS Web Ring? |
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