April 25, 2023
Whitney Johnson was born to Tanya Watters on February 17, 2000. She was born with an omphalocele, a rare condition in which a newborn’s organs are outside of their body. Whitney was rushed to the natal intensive care unit, but the hospital she was born in was not able to perform the lifesaving surgery Whitney needed. She was then transferred to another hospital that could perform the procedure to put her organs inside her body. The surgery took 24 hours, and doctors estimated that Whitney would only live for another two years.
Whitney lived well past her life expectancy but needed continuing care and support. Whitney’s kidneys were abnormally shaped and didn’t work properly, and at 2 years old, Whitney had her first dialysis treatment. She started out with one-hour dialysis sessions, but over time, they extended to three-hour sessions. Whitney was unable to receive a kidney transplant because of other health conditions. And during that time, Whitney developed more complications. Her health began to decline. Whitney was admitted to a hospital as an inpatient and passed away on April 13, 2020, at 20 years of age.
Whitney’s mother, Tanya, was her caregiver and her advocate. Even though Whitney’s life differed from her peers, Tanya worked hard to help her daughter live as normally as she could. Tanya was always there for her, no matter what challenges and difficulties her daughter faced.
There were many times when Whitney’s professional care team was nervous for her, but she always pulled through. Tanya recalls that she saw Whitney as a “young lady who was born to fight, who taught [me] to love, and to have strength and courage.”
After her daughter’s passing, Tanya decided to become a dialysis technician so that she could help people see that life didn’t end with dialysis. She also wrote a book about Whitney’s life, called Whitney’s Purple Walker, and she became a motivational speaker. Tanya is also training to become a registered nurse and plans to return to the dialysis clinic.
“I know now that it’s my turn to let people know that being a kidney patient is not easy,” she says. “I always let them know that my daughter was a patient and I promised her that I will always, always make sure that people know who she is—and that people will get their strength when I talk to them about her.”
Tanya also advises people with kidney disease to take care of themselves and their bodies as best they can. “Keep your head up. […] Keep fighting, keep pushing, keep thriving. [The dialysis machine] doesn’t stop you from living your life.”
Tanya will continue to write and advocate for people and children with kidney disease. She was featured in the National Kidney Foundation’s Patient Symposium on April 30th and will be a guest speaker at the Cleveland Kidney Walk on June 11th. Tanya is grateful that she can act as Whitney’s voice to the world. “There’s always hope, and I’m thankful that Whitney lived so I can tell her story.”
To learn more about NKF’s resources visit www.kidney.org.
Come watch Tanya speak at this year’s Cleveland Kidney Walk on June 11th. Register today!
-Ciaran Conway
