Kaitlyn's Korner: Surgery Rescheduled

Sunday, January 30, 2011

Surgery Rescheduled

Kaitlyn was supposed to have surgery tomorrow morning but she has a cold! We decided to cancel it and reschedule for when she is completely cold free. We don't want to risk any complications or create a longer than needed hospital stay. We will keep everyone posted as to when the surgery will be rescheduled for. Thank you to everyone who has reached out to us and for all of the continued thoughts and prayers.

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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.