Thank you for stopping by Adrian’s COTA website. 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. Whether you’ve been with us from the start of Adrian’s heart journey or are just joining in—on behalf of Adrian and his family, we appreciate your interest, love, and caring.
A number of people have asked if there is anything they can do to help. In addition to the many acts of kindness that our friends, neighbors, colleagues, and even strangers have provided in helping us get to this point, we would suggest three additional options. First, please consider a gift to COTA in honor of Adrian. One hundred percent of contributions made to COTA in honor of a transplant patient go directly toward transplant-related expenses, and gifts to COTA are tax deductible to the fullest extent of the law.* Second, please consider registering as an organ donor if you haven’t already done so. The United Network for Organ Sharing estimates that in the U.S., 20 people die every day waiting for a transplant. Your willingness to help can help prevent such senseless loss. And third, please follow our blog posts below to keep up with Adrian and offer encouragement. The transplant journey—from diagnosis, to preliminary treatments, through the unknown of waiting, to transplant surgery, recovery, and beyond—is not an easy path. Adrian will be happy to hear from you!
To learn more about how we got here—how a vibrant, healthy, 17-year-old could possibly need a new heart—read on….
*Please understand that because of the nature of Adrian’s dad’s job, gifts to COTA in honor of Adrian must remain anonymous to the family. From Adrian and his extended family, we offer our sincere thanks for your love and support.
Life was looking good for Adrian as his senior year of high school began. He had traveled to Washington, D.C., over the summer to participate in the National History Day competition, was closing in on completing his Eagle Scout requirements, and had been named co-captain of the rifle team. And then everything changed. Out of nowhere, Adrian–at age 17—developed cardiomyopathy: heart failure. It was idiopathic; the doctors said they didn’t know the cause. Adrian would need a heart transplant.
A chill settled over all of our lives as Adrian was snatched out of his happy life in Fairbanks, Alaska, and found himself at Seattle Children’s Hospital, where he would stay for months. Thanksgiving came and went, and then Christmas. How long would it be? Adrian couldn’t stay in Seattle by himself, of course, so his mom and dad–Danette and Earl—tag-teamed caring for him and for his three younger siblings back home. Adrian’s medical team put in a heart pump, he was put on the National Transplant List, and we waited.
Adrian received his new heart—his “Forever Heart”—on January 22, 2019. It’s a game-changer, of course. Thanks to the incredible gift of organ donation, Adrian has a new lease on life. And despite the medical setback, he is on track to graduate from high school in May, 2019. So here we have a young man about to step out into the world on his own—but unlike most young people, he’s already looking at a significant medical-financial burden as he starts his journey into adulthood. Adrian will be on anti-rejection medications for the rest of his life, and will require periodic check-ups and tests to make sure all is well with his new heart. And despite being well prepared with insurance, Earl and Danette are also looking at medical expenses that no one could really plan for. A heart transplant is estimated to cost well over $1 million. Much of this should be covered by insurance, but we all know that out-of-pocket expenses, co-pays, and reimbursement limits mean that one’s personal responsibility can add up quickly.
Friends, colleagues, neighbors, and even strangers have been gracious to our family in countless ways as we have walked this path that no one ever expects to find themselves on. We are enormously grateful for the kindness and love that have brought us this far, and would greatly appreciate your gift in any amount to COTA in Adrian’s honor.