Aspen Johnson loves to play baseball and golf. He's also an aspiring chef who hopes to own his own restaurant one day. And right now, at age 12, he's the newest voice behind the Yes I Will Wisconsin radio campaign in the La Crosse area, hoping to encourage more people to become registered organ and tissue donors while sharing a message that is close to his heart.
Aspen is among the 15 children in Wisconsin and 897 nationwide who are awaiting a kidney transplant. By helping to promote organ donation, Aspen hopes he can help kids like himself and people of all ages get the organs that they need to survive.
Aspen is no stranger to hospitals or dialysis. When he was six months old he was diagnosed with Atypical Hemolytic Uremic Syndrome (aHUS), a rare genetic condition that damages vital organs, including the kidneys. At that time Aspen 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. He has been on dialysis ever since.
Aspen hooks up to a dialysis machine at every night until about in the morning. He visits American Family Children's Hospital for monthly check-ups. Aspen also takes many medications, a handful with each meal, plus growth hormone.
"Kids like Aspen need transplants now while they are in their prime growing years," said Beth Gerndt- Spaith, RN, pediatric transplant coordinator. "Any time a child has renal disease; his or her growth is inhibited. The best way to optimize growth is with a transplant, as opposed to staying on dialysis. That's why it is important for children to receive a kidney transplant sooner rather than later."
There is good news and bad news for Aspen. The good news is that there is now a medication that prevents recurrence of his disease, so he has been placed on the wait list for a new kidney. The bad news is that he's been waiting for about a year and a half. Because his transplant increased his antibody levels, and the fact that he's had blood transfusions, it is difficult to find a well-matched donor kidney. Because Aspen's disease is genetic in nature, neither of his parents is able to be a live donor for him.
"When we do not have a live donor for a child, it is especially important to find a quality deceased donor kidney," said Beth." We want to make sure the new kidney will last as long as possible."
Aspen is very energetic and his mom says that many people don't even realize his health condition. He would love to wrestle and play football but is limited in contact sports. As a middle-school student, he is also feeling some of his limitations a little more this year, but his attitude remains open and positive.
"We've raised him without special treatment or extra coddling," said Katie, Aspen's mom. "He plays and fights with his 8-year-old brother, Brooks, like all brothers do, and doesn't waste time feeling sorry for himself."
Aspen is really excited about sharing the message of organ donation.
"He understands that this is important not just for him, but for other kids and families too, really for people of all ages," said Katie.
In Aspen's words, "Maybe I can help someone else get a new heart or the kidney they need."