KURIOUS Katie

Friday, March 16, 2012

Williams Syndrome

I would like to share how my family has come to be familiar with Williams Syndrome.  Bare with me, I'll try to condense the story...
 

About 3 years ago, my sister announced she was pregnant--we were ecstatic to say the least.  We could not wait to meet this precious baby that was due October 31, 2009. They had a difficult time getting pregnant so this was music to our ears.  My sister's pregnancy went well up until the 5th month.
She found a sore lump in her stomach which the doctors said was a fibroid tumor.  The doctors planned to keep an eye on it throughout the rest of her pregnancy and she was introduced to a high-risk doctor just in case.  My sister was advised to continue as she normally would, not to stress.  Come September, my sister woke up in the middle of the night with excruciating pains in her stomach so my brother-in-law rushed her to the ER.  Our fear was happening...she was going into labor too early.  She was admitted into the hospital to stop the labor, which was successful.
 
 After a few days in the hospital, she was released but on strict bed rest at home.  She would have to go to the doctor 2 times a week for checkups.
On October 13, Jenny thought it would be another typical day at her routine doctor's visit...but it was not.  They called the doctor in because her baby's heartrate was dropping.  They quickly decided to do an emergency C-section.  Late morning on October 13, 2009, we met Jared Camon Stowell.  We thought finally the stress of the pregnancy is over and he is here.  Little did we know, the stress was not over it was beginning...
 

Camon was considered a preemie and was having trouble breathing, along with other issues.  He had to be transported to another hospital in town to the NICU.  He remained in NICU for almost 2 weeks for further testing and health reasons. It was a great day bringing him home.

 
While at home, my mom had mentioned how Camon continued to have swollen eyes so my sister brought it up to Camon's pediatrician.  They ran a few tests and my sister was given a call one afternoon that his thyroid tests came back and he needs further testing very soon.  The only pediatric endocrinologist in Shreveport was out of town so he made arrangements for Camon at Dallas Children's hospital.  There, Camon was diagnosed with hypothyroidism and adrenal gland deficiency.  No one wants to take their child to a hospital but this specific hospital was an amazing place.  They did a great job all-around..educating and witnessing on how "God gives special babies to special parents". So true!
Well we all thought we had everything figured out until about a month after Christmas, Camon was sick again.  They took him to the doctor, where he coded 2 times because he could not breathe. This was the scariest day ever! God spared his life and we later found out he had RSV.  While in the hospital, many more tests were done.  This is when we came to find out Camon had Williams Syndrome.  My family not only did not know what this syndrome was, but we had never even heard of it.
 Williams Syndrome is caused by a deletion of a chromosome.  It is associated with medical problems, learning disabilities, highly social personalities, and a love for music. They have distinct facial features such as a small upturned nose, wide mouth, full lips, and puffiness around the eyes.  It affects 1 in 10,000 worldwide, so Camon is our special baby!  He is the most loving baby!  Camon has been such a blessing to our family, has brought our family closer in many ways.  I truly believe God gives special babies to special parents.  God never tells us it will be easy but we know it will all be rewarding! Camon is only 2 years old, has many issues, and still has many things to work through but I pray that he touches people's lives as he lives. I know he has touched my life and will forever hold a special place in my heart.
I wanted to tell this story because I hope this will spread the awareness of Williams Syndrome, even if in a small way.
 
 
 

8 comments:

  1. Thank you for sharing this! I've never heard of Williams Syndrome. I love how you said "he's your special baby." Special indeed!

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    1. Thx! It's funny...I've wanted to talk about williams and finally do and abc 20/20 did a special on it this past saturday night!

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  2. He is such a doll! You and your sister look so much alike :) Yall are both so pretty!

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    1. Thanks so much...I think so too! Thanks for taking time to read this post.....it means so much to my family for others to know the syndrome.

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  3. Ohmygoodness. He is a doll. My 8-year-old has WS. If you are anything like me, when you see a face with those familiar features, your heart bursts. They are the most beautiful children in the world!

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    1. Nice to meet you....and they're the sweetest kids!

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