Danny Zivian is a pretty typical kid. He attends Hillel Day School of Metropolitan Detroit, loves history and geography, and is in an accelerated reading class. In addition to Danny’s passion for school, he loves baseball and hopes to be a baseball play-by-play announcer one day: “Like Mario Impemba and Rod Allen,” Danny says.
Although Danny is similar to other boys his age, he is also very unique. When Danny was just 11 weeks old, the doctors realized that something was unusual about his kidneys. Instead of having two full-functioning kidneys that grow as he gets older, one of Danny’s kidneys does not work and the other never started growing.
“My right kidney’s tube was bent…a lot,” Danny says. “They had to do surgery to figure out what to do with it. So, they took it out and put it back in. My left kidney is still really, really tiny. It was definitely not working as well as it should be.”
Kidney failure is diagnosed when an individual has 15% or less kidney function and must receive dialysis or a kidney transplant in order to maintain life. If an individual is alerted that he or she has less than 30% kidney function, then he/she must prepare for dialysis or a transplant. Currently, Danny has less than 50% current kidney function or stage 3 chronic kidney disease (CKD). Debra Zivian, Danny’s mom and a huge part of his support system, says that Danny’s left kidney is considered renally insufficient.
“The prognosis is that as he grows and his left kidney doesn’t, it won’t be able to keep up with his body,” Debra says.
Despite the challenges that Danny and his family have faced and will continue to deal with in the future, Danny is very positive and active in keeping his kidneys as healthy as possible. “I have to drink lots of water. I bring a water bottle with me to school all the time,” says Danny.
Debra explains that it was hard at first for her and Danny’s father, Bob Zivian, to send Danny to school because it limited their control in his care, but he’s become very involved and dedicated. With the support of Debra, Bob, and Danny’s younger brother, Matthew, as well as the support of Danny’s school and others, Danny has become hands-on in his care.
“It hasn’t been difficult for him to be on board with the care. When he was younger, it was much harder going to the clinic and the blood draws because they were so scary for him,” Debra says. “He’s such a great kid and he’s so active in his own care that he makes it a lot more palatable. For example, I’m the one that gives him his hormone injections every night and he helps clean the tip of the needle with the alcohol and dials up his dose.”
After doing some research about resources for people with kidney disease, Debra and Bob came across the National Kidney Foundation of Michigan (NKFM) during the organization’s Kidney Walk season. The NKFM’s Kidney Walk is a fun, inspiring community fundraiser that calls attention to the prevention of kidney disease and the need for organ donation. It's also an opportunity for patients, family, friends and businesses to come together.
“When he was old enough to understand what the Kidney Walk was about and how raising money and fundraising was important, he kind of took over,” says Debra.
Danny’s involvement with the NKFM’s Detroit Zoo Kidney Walk is much like his active participation in managing his kidney disease. Danny has made significant contributions to the Detroit Zoo Kidney Walk since he was only 3 years old. His mentality is to simply do his best in fundraising instead of setting a specific goal.
“I don’t really have a goal…I never put up a goal. If you put up a goal, each year the same one, that might be really tricky,” Danny claims. “The first time I went to the wrap-up party, I raised $800. The second year, I raise $900.”
Danny’s positive outlook on his health and life is an inspiration to the renal community and Kidney Walk participants.