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 Portland, Oregon, five different times and I have been hospitalized more times than I can count. These lifesaving flights were through Panda and Life Flights. At age 2, I had a tube placed in my tummy that I am still fed through. This helped with a lot of my weight related issues, but there were still so many other things that I battle with. To this day I am still tube-fed and non-verbal as well as use a wheelchair for mobility. Being nonverbal makes it very difficult to express myself as well as let my parents and medical personnel know what hurts and what makes me happy. My parents have adjusted and are able to pretty much know when I am hurting, and they are very good at making me happy.

My condition has caused both vision and kidney issues for me. I am blind in one of my eyes as it did not fully develop and the vision in my other eye is limited due to Cerebral Visual Impairment. As for my kidneys, I have a disorder called Nephronophthisis that causes hyperfiltration of my kidneys. We have known my whole life that I would eventually need to have a kidney transplant due to this disorder.  I have always had to have a large amount of free water everyday as my kidneys do not absorb it, it just flushes right through. 

I am now in stage 4 Chronic Kidney Failure and bordering on Stage 5, which is end-stage kidney disease and could require dialysis. We are praying that I am able to receive a new kidney prior to having dialysis as the possibility of my body rejecting the new kidney increases drastically once dialysis begins. I have done everything to complete my steps to qualify for transplant and should be activated on the UNOS donation list soon. Pediatric patients are made a priority on this list so we will hopefully not have to wait too long for kidney.

This is where we need your help. There will be many bills and expenses that will come with me receiving this gift.  I will be required to be on immune-suppressive and anti-rejection medication for the rest of my life, several of which are possibly not covered or are partially covered by insurance. There is also a possibility that part of my surgery may not be covered. For this surgery my family will have to relocate from our home in North Bend, Oregon, to Portland, Oregon, which is 4 hours away for at least 2 months. After I am discharged from the Oregon Health Science Hospital (OHSU) I will have to travel back to OHSU once or twice a week for six months for clinicals. There will also be trips to OHSU for the rest of my life every 1-6 months after that for clinicals.   

While we are staying in Portland there are many expenses that will need to be covered to including lodging, food, and travel expenses while we are in Portland and commute back and forth. There is also the need to be able to pay for our expenses back home while my Dad is on medical leave from work and my Mom can work part-time remotely while we live in Portland. As you can imagine this is going to be very challenging, so we have partnered with COTA for assistance with transplant-related expenses. With your generous assistance, we pray that our $50,000 dollar goal for COTA in my honor will be reached.  Thank you for your help and support.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.