In 2008, our son Jake Krahe was diagnosed with cystinosis, a rare metabolic disease that affects approximately 500 children and young adults in the United States. Cystinosis causes the amino acid cystine to accumulate in the cells of the body, slowly destroying all major organs including the kidneys, liver, eyes, muscles & brain.

Jake is 15 years old and just finished his freshman year of high school. As with most high school first-year students, this was a big year of transition. It meant leaving a small school community that has supported Jake for the last eight years. An elementary and middle school where he was surrounded by wonderful teachers, staff, and a school nurse that acknowledged the many ways that cystinosis affected Jake. A community that gladly extended support and provided an opportunity for Jake to succeed in school. 

Jake now attends a large high school where most of his teachers and peers do not understand that Jake has a disease that affects him every day. They don’t know that behind his smiling face, he manages nausea, headaches, dehydration, fatigue, eye pain, and joint pain. They simply see Jake, as a typical teenager that earned academic honors, joined the high school bowling team, and wants to be an officer in the Spanish Club next year. In some ways, high school is a rite of passage. A time for teenagers to become independent and responsible for their own well-being. Jake is surely doing this and as always, he continues to face each new challenge with humility, courage, and strength. 

This summer you will find Jake learning to drive, fishing, or preparing to compete at the Scholastic Clay Target Program (SCTP) State and National Championships for Trap, Skeet, and Sporting Clays events. You will see him enjoying time with friends, camping, and lugging his infamous 1-gallon water jug everywhere.

Thank you for supporting Jake and cystinosis research!
Amy & Jeremy, Jake & Austin Krahe