Ninety percent of the pictures on Grey's blog were taken by Stacy Sellers. I would have paid a millions dollars for them, but she would have never let me. I can't even put her talents into words. Check out her new site. She's incredible!
www.sellers-photography.com
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Hi,
My name is Tanys. I'm from Wisconsin. We, too, lost a son from Krabbe Disease. Alex was 13 months old - he would be 21 now. We have two other boys, Adam (20), and Jeremy (8). Jeremy was also born with Krabbe, but he had a stem cell transplant at 29 days old. He is doing well.
Just wondering - have you heard of Hunter's Hope? It's a foundation just for families of leukodystrophies started by Jim and Jill Kelly, whose son, Hunter, also had the disease. They host a symposium every summer for families, scientists, and doctors to get together and share and learn about this disease.
There's also a message board (www.krabbes.org) for families.
I'm so sorry for your loss. I know that it is the hardest thing in the world to endure. I'm still "enduring" it. There are still days that I cry - and it's been 20 years!
May God hold you in His embrace ... and heal your heart.
Sincerely,
Tanys
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