Our Story
Hi, my name is Xander Nix and I am 17 years old. I live on the Oregon Coast, and I suffer from a rare genetic condition called Joubert Syndrome. It is a brain disorder that has caused me many issues throughout my 17 years of life. In the first 2 years of my life there were many medical issues that required me to be flown to Doernbecher’s Childrens Hospital in...
Continue Reading »Updates
What Started Our Downward Spiral
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Unfortunately, Xander had an Acute Kidney Injury, AKI, happen at the end of 2020, due to a new dietitian removing a large amount of the free water from... Continue Reading »
Numbers are dropping
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Well we have now been on the waitlist since 9/26/2023. That means we are starting our 5th month of waiting. We were originally told that the wait time... Continue Reading »