Kaitlyn's Korner: Feeling better today

Monday, August 15, 2011

Feeling better today

Hanging out in her big girl bed!

Kaitlyn has been on oxygen for 24 hrs without another episode where her oxygen concentration levels have dropped. This is really great!

We are keeping her on a low level of oxygen tonight and if it goes well, try her without oxygen tomorrow. We will be keeping the pulse/ox monitor on her all the time though so that it will alarm if her levels get too low.

Thank you for all of your prayers! Please keep them coming, we need them!

1 comment:

AnonymousAugust 16, 2011 at 12:03 PM
Love the audience of stuffed friends keeping an eye on kaitlyn in this photo. We noticed sleeping scout right in front ... One of Wylder's favorites! Arms around all of you from us! Xxoo Steven. Shannon and Wylder
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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.