Knox turned 11 months old this last week and we love him more than words can say.
But time is not on our side.
Already, the physical changes that come with Cockayne’s are becoming more noticeable. My heart hurts to see these changes.
His hair is thinning, his eyes are becoming more deep-set. What a wretched, wretched disease. How I wish I could do something for my baby.
Press PAUSE. REWIND. STOP!
I met another mom this last week who’s son has CS Type I and she gave me a bottle of anti-oxidants from pine bark. She said she thinks it has helped slow down the aging in her son. She gave me the bottle in exchange for my promise that I would use them. I have mixed up the powder from the capsule in his cereal every day since. And now we wait and see what happens.
I got the Etsy shop up and running today to try to raise funds for CS research. It’s a small effort now, but it’s my hope that it may grow bigger in time. And though I named it “Cards for Cockayne Syndrome” it’s certainly not limited to cards.
Many thanks to my friend Susan for donating some lovely cards for the first listings! My goal is to have many more cards listed before July 1st so I may not be posting as much while I’m trying to get some stuff made.
Dear blogging friends, will you please tell your artsy-craftsy friends about this effort?
Thanks so much!
~Scarlett
*Click here to visit my new Etsy shop for CS Research*
Dearest Scarlett, you know you and Knox are always on my mind. I wish so much anyone could do something for him – treatment, advancing research, anything. I’m so glad you opened the shop! I need to email you about that, I think I can add some cards to the shop too.
Thanks so much, Ms.Ikeda,I appreciate your thoughtful words. And I would love anything you have to donate to the shop, I love everything you do!
~Scarlett
Scarlett,
I am happy you are doing this! There is so many health mysterious in the world; Knox and so many others need help~ I now know what I will do for my PIF. I will email you and let you know when it is on it’s way~ xXx
@Ellen-Thanks so much, Ellen and I will be anxiously awaiting your PIF item, sounds exciting! Thanks for chipping in!
~Scarlett
hi Scarlett,
i cried when i saw this post. i dunno what else to say to you except be strong for Knox and just hang on there and be positive! the photos are so achingly beautiful … i will be thinking of you and Knox. Hugs and kisses and much positive healing thoughts to baby Knox all the way from across the globe.
HUGS!!
Luthien.
your artwork is very beautiful and so is your son… praying for you all… Bridget