Kaitlyn's Korner: Surgery next week

Wednesday, February 2, 2011

Surgery next week

Kaitlyn's G-tube and Nissen surgery has been rescheduled for Wednesday, February 9th. It was a really good thing that we canceled her surgery for this week because we later found out that she has a double ear infection! She will be rechecked next week before surgery to make sure the infection is completely gone.

2 comments:

Stacy AmersonFebruary 2, 2011 at 6:11 PM
Thanks for the update!
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AnonymousApril 11, 2012 at 1:19 PM
You know I check the blog later towards the end when Shannon told me about Kaitlyn, so now I will start from the beginning and see the beautiful smiles she has. Just amazing!!! She is really amazing to me.

Penny
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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.