Steve Shank

Steve Shank and his family are deeply indebted to Tommy. His sacrifice and unselfish act of organ donation saved Steve’s life.

in awe of this holy exchange and the tremendous connection shared by Steve and Tommy.

Steve is an Iowa City, IA native and legend. He only became more loved when he was diagnosed with an extremely rare genetic mutation that causes Hermansky–Pudlak syndrome (HPS). The condition is associated with many problems, including albinism, eye problems and bleeding disorders. In Steve’s case, it resulted in lung problems. In less than a year’s time, Steve went from a noticeable shortness of breath symptoms to total lung failure.

True to form, Steve faced the crisis head on, after all, no obstacle ever stopped him before. He was born with low vision, but he still downhill ski raced as a kid and mountain biked as a young man. Steve’s lifetime of hurdles prepared him to make the biggest comeback of his life — surviving the 79-day turbulent hospital stay and 35 days on Extracorporeal membrane oxygenation (ECMO), the “ICU life support & bridge to transplant.” He fought each day for life.

With faith in God, his altruistic donor, Tommy, and the Mayo Clinic’s multidisciplinary team in Rochester, Minnesota, Steve’s persistence paid off. On October 23, 2016, he received the lifesaving gift of a double lung transplant at age 40.

Because of Tommy’s courage and unselfishness, Steve is humbly extending his breaths. Tommy’s choice to give his organs has not only provided life to Steve, but enriched the lives of his wife and two young children. We are in awe of this holy exchange and the tremendous connection shared by him and Tommy. Our gratitude for Tommy, his family, and the many donor families who suffer a loss is profound and always on our hearts.

We aspire to raise awareness alongside a tiny group of warriors globally fighting for HPS awareness and a cure and to advocate for Organ Donation volunteering as LifeSource Ambassadors. We want to shine a light on all who helped us navigate the complexities of this blessing; God, Tommy and his family, Mayo Clinic, LifeSource, the HPS network, the NIH Natural History Studies for Rare Diseases and Bldg 10, #NLRidge, our Luther Family, as well as the unnamed army of support in our network ensuring a second chance at life for Steve.

HPS is a rare genetic disorder that results in oculocutaneous albinism (decreased pigmentation), bleeding problems due to a platelet abnormality, and pulmonary fibrosis. Currently there is no cure for this fast-progressing disease, only a band-aid medication and the hope of a lung transplant. The general prognosis is poor as the disease causes dysfunctions of the lungs, intestine, kidneys and/or heart. It’s major complication is pulmonary fibrosis, which typically exhibits in patient’s ages 40–50 years. Please visit the HPS Network website at www.hpsnetwork.org to learn more about what Steve and others are battling.