COTA for Team Colin

Our Story

At the beginning of the third trimester of pregnancy, we knew Colin had something wrong with his kidneys.  The doctors weren’t even sure he would survive.  Not only were his kidneys not making baby pee, the kidney issue caused his lungs to not completely develop.  Everyone started praying for baby pee – no joke!  Through some miracle, his kidneys started to work two days after he was born.  It was rough sailing for a couple of months, but he pulled through!  After genetic testing, the doctors officially diagnosed him with Autosomal Recessive Polycystic Kidney Disease (ARPKD).  It was hard to know what his future would hold. 

Most people never knew Colin had this disease; to the outsider he looked like every other kid!  Most people were unaware of the everything in the background: the medications,  regular doctor visits, blood draws, and scans.  We knew that someday he would need a kidney transplant, but we always hoped it would be “way down the road.”  Thankfully, Colin has enjoyed many years of normal life through being a hardworking student, participating in cross country and track, playing two instruments in band, and many other hobbies.

Over the past year, his kidneys have begun to show signs of rapid decline and he needs a life-saving kidney transplant. He has been evaluated and approved for a transplant, and the team at University of Minnesota are actively testing many possible live kidney donor candidates. We are hopeful that one of these selfless people will be a match.

ARPKD usually comes with varying degrees of liver disease.  Colin’s liver is also starting to cause some problems and he will eventually need a liver transplant as well.  For now, we focus on the kidney transplant as that is the more urgent need.

A kidney transplant is not a cure for kidney disease, but is a treatment. After his transplant, Colin will be on immunosuppressant medicine for the rest of his life and involve many 10-hour trips back to Minneapolis for follow-up appointments.  Our family has partnered with COTA to raise money in honor of Colin to assist with a lifetime of transplant related expenses.

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.