Kaitlyn's Korner: Last night

Sunday, August 14, 2011

Last night

Kaitlyn went to bed last night with just the pulse/ox on, no oxygen. She did really well until about 2:30am. The alarm went off and in less than the 10 seconds it took to get to her room, her oxygen had dropped to the 60s! She was immediately put back on oxygen and stayed on it overnight.

This morning we took her off oxygen and about an hour later, she dropped really fast again. It looks like she will be on it for the time being.

Thank you for your continued support and prayers. We need them!

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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.