Tag: cockayne syndrome

Baby Knox

Knox turns 15 months

My little angel, Knox, turned 15 months last week. Yep, his hair is still as crazy as ever! We celebrated by driving to Morgan’s Wonderland in San Antonio. While we were there, we had the opportunity to meet an adorable little girl named Grace. Aren’t they sweet? They aren’t related, […]

Baby Knox

Love

This is one of my favorite pictures because it’s a picture of LOVE. Knox, on the right, is my special little angel with Cockayne Syndrome. Currently, there are about a dozen children with his type of CS in the United States. His big brother adores him and wants his picture […]

Baby Knox

Happy First Birthday Knox!

Brightly colored streamers hanging in the windows….I think they were Knox’s favorite party decorations!   He was able to see them really well when I opened the blinds. Here’s what I did with the leftover crepe paper rolls. Kinda cute? Happy Birthday Baby Boy! We celebrate the joy you’ve brought into our family and the […]

Photography

Self-Portrait With Butterflies

One of my favorite Renaissance artists, Albrecht Durer, created many images of himself in his lifetime; his first self-portrait was drawn around age 13. I always enjoy looking at artist’s self-portraits. They can reveal so much without any words at all.   (love this one). Many times, self-portraits reveal the artist’s emotional condition and what their situation in […]

Baby Knox, Drawings

“Stare Cards” for CS

I wish people would stop staring. I designed some cards to give to people who stare at Knox. It’s happening more and more frequently.  People can’t help themselves. Their eyes keep looking over at him.  They don’t say anything but their eyes ask the questions loud and clear. “What’s wrong with that baby? Is […]

Art Cards

Antique Butterfly Postcard

Look what I found! I came across this precious Ellen Clapsaddle postcard in our local antique mall. Oh my goodness, my heart skipped a beat when I saw the tiny butterflies being painted. Being well over 100 years old, the copyright on this image has expired, so you can already guess that I […]