To describe our growing up in the lowcountry of South Carolina, I would have to take you to the marsh on a spring day, flush the great blue heron from its silent occupation, scatter marsh hens as we sink to our knees in mud, open an oyster with a pocketknife and feed it to you from the shell and say, 'There. That taste. That's the taste of my childhood.' - Pat Conroy

April 10, 2013

CVID (story of my nephew, Devin)



Devin was born in the fall, 13 years ago. He was a chunky little thing and full of life. Such a great baby and an absolute joy to be around. When Devin turned 18 months old, it seemed like things changed dramatically. He wasn't eating like he should have been. He was sleeping more so than any 18 month old child should. He was getting sick quite frequently.
 
During one of his virus' he started to choke, and literally was turning the color blue. My sister and her husband rushed him to the Emergency Room, days later he was diagnosed with
 
 
Common Variable Immunodeficiency or CVID
 
It essentially means, he has no immune system, thus 90% of the time when he gets sick, even if it's just the common cold, he has to be admitted to the hospital until he is well. Something like the common cold, which normally lasts 3 - 7 days with us, can last up to a month for him.
 
Devin has to have weekly blood transfusions in which my sister does from home with a small machine. God only gives you what He thinks you can handle, well He thinks my sister is a Bad Ass, and so do I! I couldn't imagine having to go through what she goes through with her child, or any parent with a child who has an illness, for that matter. I thank God daily for keeping Princess happy and healthy!
 
Devin, we were told by doctors, would not live past the age of 3...well God has proven them wrong because he will be 14 years old this year! We are so blessed and lucky to have him as a part of our family. He is so strong and courageous, and an inspiration to us all!
 
xo
 
 

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