Tag: CS2
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 […]
Butterflies of Denmark
I’ve continued reading about other families who have had children with Cockayne Syndrome. All the stories are hard to read and I always cry. But ignorance is not bliss with this disease. I need to know what to expect so that we can give Knox the best care that we can while […]
All The Words You Said
EAT THEM. Yes, YOU. Eat them all. You said,”It’s not God’s will for your baby to be sick.” You said, “Knox will thrive and grow, in Jesus’ name.” You even said God would give him new DNA. You said I needed to CLAIM the promises that are available in Christ *in order to* […]
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 […]