$808 of $2,000
13 donations

This fundraiser ended on 08/18/12

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Please show your support for our precious Katelyn's Care!

Katelyn was diagnosed at the age of 3 with Glycogen Storage Disease (GSD) Type 1b in July of 2011. Most children are diagnosed before the age of 1 with GSD. After having such a late diagnosis with this very rare genetic disorder, she is now in need of an inpatient visit with Dr. David Weinstein at the University of Florida Glycogen Storage Disease Program. She is unable to get the level of care needed in the Chicagoland area due to the lack of knowledge and expertise by the local specialists that she has seen. Glycogen Storage Disease type 1b only affects one in a million people worldwide. The main treatment for this is drinking pre-measured doses of corn starch every 4 hours, around the clock, along with eliminating all sugars from the diet. GSD Type 1b causes hypoglycemic episodes, high triglycerides, high uric acid levels, high lactic levels, IBD, neutropenia, anemia, and Crohns Disease. The corn starch helps to maintain the blood sugar for an extended period of time therefore preventing the possibility for seizures, severe hypoglycemia, and even death. Katelyn can not have sugar, fructose, sucrose or lactose. Imagine having a 4 year old child and having to say no to fruit, ice cream, cake, cookies, milk, etc. Also, imagine yourself having to wake up every 4 hours to feed your child corn starch. Every minute counts, which means the 1am and 5am corn starch feeds are just as important and have severe consequences if not administered. The every 4 hour corn starch feeds will continue throughout the rest of Katelyn's life, not only affecting her, but also affecting her parents that have to make sure they wake up for her corn starch times. This disease affects the entire family. Since meeting Dr. Weinstein at the Glycogen Storage Disease conference in Indianapolis in September 2011, Katelyn has had full blood work ups done every 4-6 weeks to determine any progress in her high levels. Two days after meeting Dr. Weinstein her labs were drawn and her triglyceride level was 2210, this is on a normal scale of 0-149. Since then she has made progress, with her lowest level of 353, but still is maintaining other levels much higher than where she needs to be. Dr. Weinstein feels that with proper care she WILL get to normal levels!!!

***update, Katelyn will be seen in September 2012 instead of January 2013 as originally planned. This means that the family has already hit the deductible for the year and will just be raising travel expenses for the trip to Florida. The money raised will go toward the travel expenses for Katelyn to go to visit Dr. Weinstein in September 2012. She will be admitted to the hospital to have a 3 day inpatient stay. During that stay Dr. Weinstein will be able to determine what her exact dosage of corn starch will be, along with running other tests. This is very important for GSD patients. If the corn starch dosage can be pinpointed, all her high levels should return to normal, along with her liver shrinking back down to normal size. Currently her liver runs the entire length of her abdomen, causing her to have a "buddha belly" and putting pressure on her diaphragm causing her to have trouble breathing at times.Please donate what you can, knowing that all donations will be going towards getting Katelyn the right level of CARE for her very rare disease.

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