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Saturday, July 26, 2008

And a little child will lead them...

Today, I want to share something written by our 14 year old son, John. He was confirmed at our church earlier this year, and for class, each child had to pick a subject to do a faith project about. Our son, bless his heart, picked his little brother Joey. And here is his story...

The subject of my faith project is my brother Joey. We was born on April 26, 2004. The doctor's thought right away there might be something wrong with him. When Joey was a few weeks old, he was diagnosed with Cornelia de Lange Syndrome (CdLS).
CdLS is a congenital syndrome, meaning it is present from birth. It affects children and adults both physically and cognitively, and there are estimated to be 10,000 children and adults living without a diagnosis. Children with CdLS tend to have low birth weight or delayed growth and small stature. Small hands and feet are common. The most prominent feature seems to be thin eyebrows that meet in the middle and long curly eyelashes. Some of these children experience seizures, heart defects, reflux, and vision and hearing problems. Some also battle against feeding difficulties. There can be several different physical and mental delays, and missing or malformed limbs. Early intervention is important with such activities as physical, occupational, and speech therapies. Joey attends physical/occupational therapy twice a week and speech therapy twice a week. He goes to preschool one day a week, and participates in horse back riding therapy during the summer months.
I chose to write about Joey and CdLS because my Grandma says everything happens for a reason. My mom and dad believe Joey was sent to us because God has a special plan for our lives. At first we were scared, mainly because we had never heard of Cornelia de Lange Syndrome and weren't sure what the future would be for Joey. He is truly a blessing and we feel privileged to have been chosen to take this special journey with him. We have learned a lot from him. He wakes up every day with smile on his face, and whoever takes him out of his crib gets some very cool pats on the their back from him. He tries his hardest every single day to gain strength and do the best he can do. Thanks to Joey, we have met a lot of very special people -- people who have dedicated their lives to helping Joey and other children strive to be the best they can be. My family and I have a lot of faith that God will guide us in the right direction and help us make the most out of our lives and of Joey's.

"The wolf will live with the lamb,
the leopard will lie down with the goat,
the calf and the lion and the yearling together;
and a little child will lead them."
Isaiah 11:6


  1. Awwww....that's fabulous, Rachelle. John did a great job on his project!

  2. wonderful! what a tribute to his little brother...

  3. That's awesome! John is wise beyond his years.


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