Kaitlyn's Korner: June 2011

Tuesday, June 28, 2011

Pictures from Fundraiser!

Thank you to everyone who was involved in the awesome Pancake Breakfast Fundraiser for Kaitlyn in Maryland! We are so grateful for all of your love and support and have been overwhelmed with your kindness and generosity. We really wish we could have been there!

A SPECIAL thank you to Aunt Pat who led this event (Kaitlyn's mother's great aunt)- THANK YOU!

Volunteers (pretty much ALL family in this photo)


Roses for Kaitlyn, So sweet!


Laurie and Kaitlyn's Great Aunt Pat- THANK YOU!


Erica~ Great job on the poster!

PERSEVERE- The NPD Slogan

Erica and Aunt Pat working hard

Thanks Applebee's for hosting


Learning the ropes


Yum!

Friday, June 17, 2011

Pancake Breakfast Fundraiser

We are so thankful for family support from afar! Our extended family in Maryland and their church, Severn Run Evangelical Presbyterian Church, have put together a fundraiser for Kaitlyn. If you are in the Gambrills, MD area tomorrow morning check it out!

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.