Kaitlyn's Korner: Precious Moments

Sunday, November 18, 2012

Precious Moments

Kaitlyn has taught me many things but this says it all...

3 comments:

Jill FlintonNovember 19, 2012 at 8:16 AM
I wish so many people understood this.
ReplyDelete
Replies
Cathy JohnsonNovember 19, 2012 at 8:43 AM
That so says it all. Thinking of you always, Deanna with prayers for continued healing.
ReplyDelete
Replies
AnonymousNovember 19, 2012 at 2:58 PM
Im happy that you came across this on my page!! I post so much stuff, but this was meant for you to see :) ~ It is beautiful, just like Kaitlyn!!

~ Michelle Schaffer ~
ReplyDelete
Replies

About Niemann-Pick Disease

Niemann-Pick Disease is a lysosomal storage disease that affects metabolism and is caused by genetic mutations. In order for a child to have Niemann-Pick Disease, both parents must be carriers of a genetic mutation causing Niemann-Pick. There are three types of Niemann-Pick Disease, Types A, B and C.

Kaitlyn had Niemann-Pick Disease, Type A, the most severe of the three types. She lacked an enzyme called acid sphingomyelinase. Since she didn't have this enzyme, her body couldn't get rid of sphingomyelin. Sphingomyelin has nowhere to go so it accumulated in her cells, eventually causing cell death and the malfunction of major organ systems.

Those with Type A typically live to be only 2 to 4 years of age. There are approximately 1,200 cases of type A and B worldwide with the majority being Type B. There is currently no treatment or cure for the disease. When Kaitlyn was alive, she was 1 in 5 in the United States with Type A.