Inspiration

I have come across some of the most incredible people with the best attitude since being introduced to those in the Cystinosis Community (through the internet)... People who are so knowledgeable, so passionate, and just good people, to the core..

Our baby is thriving despite this diagnosis... and we have those who have come before him to thank. I have to share with you a post from the mother of the first patient who was administered cysteamine (now Cystagon- which is the drug that is used to treat Cystinosis).

"Just a little info. about cysteamine (now cystagon). Krista Mund was the first patient to be administered cystemine in 1978 at University of California, San Diego. Dr. Schneider had tried it on one other patient who was already in kidney failure and she had a very bad reaction. The day the first very small dose was administered Krista was surrounded by nurses, doctors and a crash cart in case she had a bad reaction. Each day the dose was increased by a very small amount so as to come up with a base level which would remove the cystine without side effects. This process took 9 weeks of hospitalization. Because of Krista other children were started on the cysteamine which was a very bad tasting powder form. The rest is history and we are so proud that Krista was a pioneer in using this drug that is now helping others all over the world."
Posted by mother (Merle Mund)

Pretty unbelieveable story, right?

This forum, that I have become a part of, includes people from all over the world.. I have chatted with a great man from Chile. There is a woman from the U.K. who has two beautiful daughters, both who have Cystinosis... I wish I could mention all of the incredible people. I have been reminded, through this forum, how lucky we are to live here. Some people regularly go through great lengths to get this drug that ultimately will save their child's life. It just should not be so difficult!

I can only hope that Landon inspires others in the way that these people have inspired our family!