My name is Logan Vachon. I am a one year old and I have been diagnosed with a very rare genetic disorder called Nephropathic Cystinosis.
Cystinosis is a rare, genetic metabolic disease that causes the amino acid cystine to accumulate in various organs of the body. Without specific treatment, children with Cystinosis develop end stage kidney failure at approximately age nine. The availability of cysteamine medical therapy has improved to the point that well-treated cystinosis patients can live into adulthood.