Wednesday, July 22, 2009

Krystal

I wanted to share my darling daughter with you all today. This is wonderful picture of my late daughter, Krystal. This picture was taken two days after her diagnosis of Aplastic Anemia, on Christmas Eve 2007.

She was my partner and my best critic. She had a wonderful sense of style and color.

She passed away one year from today. I chose to share not for sympathy, but to help raise awareness of Aplastic Anemia.

Aplastic Anemia is a bone marrow failure disease. Signs are similar to Leukemia, bruising and fatigue, loss of appetite. Without working bone marrow there is no red blood cells to carry oxygen and remove waste, no white blood cells for immunity to fight diseases and infections and no platelets for clotting. There are about 500 cases a year in the US. That is roughly 50 cases per state per year.

Treatment in children is usually a bone marrow transplant. This is considered the cure for aplastic anemia. The other option used more in older people is a regime of drugs. This is to try to "re-boot" the bone marrow. (Maybe not the best or most accurate metaphor, but to me it is a simple way to understand it.) Until the bone marrow is working again there are constant blood test and transfusions.

As my son was not a match they tried the drug regime first. Unfortunately it didn't work. So they found a donor for her and she was going to have a transplant. Sadly she caught a fungus a month before transplant. She passed away seven months to the day of her diagnosis after putting up an amazing fight. Fungul infections of this kind are very agressive and usually deadly.

3 comments:

She's Batty Designs said...

I didn't know anything about Aplastic Anemia before I read this. Thank you so much for sharing this with us.

Teresa Mode said...

I know your heart aches to hold her again. I am sorry for your loss. I hope this blog helps others to know about Aplastic Anemia. Thanks for sharing.

Heather said...

I'm so sorry for what you've lost.. *many hugs* she was a beautiful child.