After an airborne bacteria infected her right eye, "simple" tasks became impossible for Nancy. Thanks to a cornea donor, she now has her vision and her life back.
Nevaeh was diagnosed with Alport Syndrome as a child, but for years it lay dormant. As a teen, it was her knees that gave her problems. This led to her receiving tissue allografts. Now, at 17, she is facing kidney failure.
Portland student, Nevaeh Dewitt, has known since she was 4 years old that she shares something in common with her dad, David. She has a rare genetic kidney disease known as Alport Syndrome. Though Nevaeh was fortunate enough that her Alport Syndrome was dormant, when she was 5 years old, her dad received a kidney transplant. She grew up learning about her health condition by watching up close as her dad lived with it. Her parents, Maria and David, educated her about her illness and raised her to be grateful and giving. She began volunteering for Donate Life Northwest and Done Vida Noroeste when she was only about 9 years old and at Doernbecher Children’s Hospital when she was about 14.
As a teen, Nevaeh began to have an unexpected health challenge. Instead of encountering symptoms of Alports, she began having pain in her knees. She had trouble walking her dog and participating in PE classes at school. Joining her friends to play on the school’s softball team or learning how to skateboard were out of the question. Doctors explained that she had loose patellas in her knees, which caused immobility and frequent dislocations. When she wasn’t at school, Nevaeh spent most of her time with her knees elevated and iced. Then, in May 2020, she became the recipient of two donated tendons, one in each knee. Thanks to all of the generous tissue donors in the Pacific Northwest, she didn’t have to go on a waiting list, but was able to receive her allografts quickly.
After Nevaeh received her donated tendons, she looked forward to a smooth recovery and the transition to an active, healthy life. But the arrival of the Coronavirus pandemic made her recovery look very differently than expected. Instead of getting together to skateboard with friends and joining school sports teams, Nevaeh was stuck at home. Then, in August 2022, unfortunately and unexpectedly, she contracted both COVID and viral pneumonia. This created an acute kidney injury, and she was hospitalized as her condition deteriorated into Stage 3B renal failure.
As 2023 continues, Nevaeh is a patient – sometimes inpatient and sometimes outpatient – at Oregon Health & Science University’s Doernbecher Children’s Hospital, receiving infusion treatments to help her kidneys. Eventually, she will be added to the transplant waiting list and hopefully receive a transplant. Then she can turn her attention to the bright, active future she has ahead of her.
Nevaeh is familiar with many different sides of donation and transplant, and she has advice for those who are undecided about whether to register as a donor: “I know that thinking about deceased donation is scary, but no matter what you donate, you can change someone’s life in a big or small way.”