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American Family Children's Hospital

2017 Transplant and Organ Donation Calendar: Aspen Johnson

Kidney transplant recipient Aspen Johnson

Aspen Johnson's family always has enjoyed boating and other water activities. But for many years, the 15-year-old couldn't join them.


When Aspen was six months old, he was diagnosed with Atypical Hemolytic Uremic Syndrome (aHUS), a rare genetic condition that damages vital organs, including the kidneys. He lost function in both kidneys and immediately went on dialysis. When he was 18 months old he received a kidney transplant, which worked well until he was 3 years old, when he had a relapse of his disease and returned to dialysis.


At first, another transplant was not a good option for him because the disease would threaten any new kidney that came into his body. But when researchers developed a new drug that would keep the organ damage at bay, he was able to go on the waitlist for a new kidney. Many friends and relatives wanted to donate a kidney to him, but it was difficult to find a good match. He finally received the gift of life with a kidney transplant from a deceased donor at University Hospital in August 2014.


Now, Aspen, who lives in Trempealeau, Wis., is able to participate in all the activities he's always wanted to do, including sleeping over at friends' houses, hunting, fishing and boating. He has his own small boat that he takes out on the Mississippi River frequently.


"I'm feeling great," he says. "I'm free."


He also has made a commitment to giving back. While Aspen still was waiting for his transplant, his family became connected with a woman who works at the local radio station. The woman's father had received an organ transplant and she wanted to begin promoting organ donation through public service announcements. She recruited Aspen to lend his voice and story to the campaign. He also worked with UW Organ and Tissue Donation (UW OTD) on several organ donation promotion efforts, including helping staff a booth and interacting with children at a farmers' market in Viroqua, Wis. "Organ donation saves lives," says Aspen. "That's why I want to volunteer."


Aspen and his family have had contact with the family of his donor to thank them, and they are grateful for the new opportunities that await him. "He was always fatigued and sick," says his mom, Katie. "Now he has become much more independent."