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 he’s here with us.
For example, instead of saying to myself every day, “We have at least 3-7 years with him,” I now know that any of his organs could fail at any time. The small comfort I took from the “average lifespan of CS2″ is gone.
I try and live each day as if it’s the last, kissing him and playing with him and smelling his sweet baby smell as much as I can. I can’t imagine not being able to smell him…moms, you know what I mean.
As hard as it is, it helps to know that there are other families on the planet that have faced this tragic disease. There aren’t many, but there are some.
I’ve learned that some families have lost not only one child to CS, but two.
This happens when a child with CS goes undiagnosed for a while because the disease is so rare. Doctors can’t figure out what’s wrong until the child is a few years old. Then, by the time the diagnosis is reached, a sibling has come along. And the second child has CS, too. It seems so cruel and unfair.
The parents had no clue. They didn’t know the condition was genetic.
One such family lives across the ocean and they had the only two children with Type II Cockayne Syndrome in Denmark.
Both beautiful boys are in heaven now. You can read about this family’s heart-breaking journey online. It was while reading their information and looking at the photos they shared with the world that I began to understand what was happening to Knox.
I’m thankful for their willingness to share what they’ve been through so that families like ours can obtain a diagnosis sooner.
I drew a picture in my sketchbook a few weeks ago, thinking of this remarkable mother and her two sons who are now “butteflies”.
The white flowers are ‘Margeurite Daisies”, the national flower of Denmark.
They live near the sea, so I added the lighthouse with the Danish flag on top.
I rubbed it with some Walnut Ink.
Then I added some color back into it in a few areas with the pastels.
I’ve been mulling over some ideas of ways to raise money for CS research. Printing my butterfly drawings on greeting cards and selling them on Etsy is the only thing I’ve come up with so far. It’s a small thing, but I want to do SOMETHING. If you have any other ideas, please comment or send me a pm.
More awareness=More funds=More Research=A CURE.