At age of 16 months, Cheyenne was diagnosed with arare, genetic kidney disorder called Cystinosis. Iknow, you're probably all asking, "WHAT'S THAT?" I will leave the medical definition up to the experts, but, basically, it effects the kidneys, eyes, muscles, and sometimes even the brain.

Cheyenne was often plauged by projectile vomiting as a baby and failed to do many of the things that healthy babies at her age could do. From the day she came home from the hospital, her family knew that something just wasn't right. Finally, when she fell below the 5th percentile on the growth chart and actually started LOSING weight, her doctor orderedtesting through the University of Nebraska Medical Center in Omaha, NE. Various tests including a bone marrow test, were performed. Now, I don't know how many people are familiar with a bone marrow test, but they are not AT ALL pleasant, especially for a child. It was then confirmed that Cheyenne did
indeed have Cystinosis.

Now, let me tell you a little about how this has effected Chey and the lives of those who love andcare about her. She did not walk until she was 22 months old. She had rickets, due to lack of Vitamin D, and such weak bones that it actually hurt to put weight on them. Everyone had to be especially careful with her because she was so fragile. Once she began taking her medications, she seemed to just spring to life!

Chey Age 2

I can remember when Tara (Chey's Mother) would have to give her medication, which had to be done at least 4 times a day. Chey would scream and cry and would have to be held down to get it all in her. I think sometimes this actually was harder on Tara, because, how do you explain to such a small child that they have to take the medicine in order to get better, and that you're not doing it to be mean or to hurt her? At this time, Cheyenne has to take a total
of 7 medications. 4 pills, 4 times a day, and 6 liquid medications up to 4 times a day. Cystinosis also effects the growth of these children. Right now, Cheyenne is already 6 years old, but only the size of a 3 year old. At age 10, she will be the size of a 5 year old. She will be lucky if she makes it to 5' tall by the time she is fully grown. You can imagine the problems this alone causes in her everyday life; in school, and with other children in her grade. Excessive thrist and frequent urination also makes things more difficult. It will be necessary in the future for her to undergo a kidney transplant.

Cheyenne is a very smart and charming little girl. She is also a very typical 6 year old and gets into trouble like all children her age tend to do every now and then. I like to refer to her as a little precious moment because she has the sweet face of a precious moment figurine, and every moment that she is here is most definately a precious moment.

I would like to thank Tara for allowing me to share a little bit about her precious daughter with everyone. I would also like to thank the University of California, San Diego for allowing me to put up links to their sites so the readers of this page may have a chance to learn more about cystinosis. So please take the time to visit the following links to learn more about cystinosis: general page about cystinosis Cystinosis Foundation

When I read what Lee has written about my daughter, it seemed like I was reading about someone else. The story is a sad and depressing one, but your wouldn't feel that way if you lived with my Cheyenne. She is such a sweet and special person. She truely is the light of our lives, and we thank God for her every day that she is with us.

Cheyenne is a very lucky girl. Her Cystinosis is very mild compared to some others. She has never been hospitalized, not once. The hardest part has been to get her to take her medicine. What the future holds for her is one of uncertainty for us, but I know she'll always make the best of her situation, and she would never want you to feel sorry for her.