Kaitlyn's Korner: Given another day

Monday, August 22, 2011

Given another day

Being able to write that Kaitlyn is here with us and had a good day is a true miracle. There is no doubt in my mind that she is here because of all of you. The prayers that you have said, whether short or long, were heard. We can't thank you enough. Time is precious and we are so blessed to have had another day with our sweet girl.

Kaitlyn with Pepere

2 comments:

Michelle@Teagan's TravelsAugust 23, 2011 at 9:24 AM
Sending lots of love and hugs. Our family added you to our church's prayer list so this week the pastors and staff are praying for your sweet family as well. Please let us know if we can do anything to help - errands, dinners, et. In Jesus' Name, Michelle
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AnonymousAugust 23, 2011 at 11:47 AM
Love, hugs and many prayers for Kaitlyn and your family.
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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.