Baby Knox

In April 2011, our baby boy was diagnosed with a rare genetic disease called Cockayne Syndrome.

Baby Knox


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 […]

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 […]

Baby Knox

Now We Know

 Now we know what’s wrong with baby Knox. His DNA results came back and he has Cockayne Syndrome (Type II). It is a premature aging condition. It’s degenerative and terminal; currently, there are no treatment options available. I knew it was going to be something serious, but deep down, I had still hoped we […]