Local families participate in kidney walk

By: Thomas Franz | Macomb Township Chronicle | Published May 27, 2015


MACOMB TOWNSHIP — More than 7,000 walkers and supporters gathered at the National Kidney Foundation of Michigan’s annual kidney walk on May 17 at the Detroit Zoo.

Two families from Macomb Township participated in the event to support a loved one battling kidney disease.

Eli Rost, 2, has been on dialysis since he was 3 weeks old. Currently living with no kidneys, Eli is set to receive a kidney in June from his mother, 31-year-old Macomb Township resident Rachel Rost.

She had a team of 45 friends and family at the kidney walk and raised more than $5,000 for the Kidney Foundation.

“It’s awesome. It’s so cool (to) know that many people,” Rost said. “I had set a goal of $2,000, so I was just shocked. I thought that would be pushing it, so I was shocked that we were able to raise that much.”

Rost first learned that her son was experiencing a problem with his kidneys during an ultrasound when she was 19 weeks pregnant. Eli was born full-term, but an ultrasound soon after his birth found that his kidneys were very small.

“They thought he might be OK, and he actually got to go home after 15 days in the hospital. He left on a Friday and came back on a Monday for a blood draw to check up, and it had gotten a lot worse, so they decided to start dialysis,” Rost said.

Eli has been on dialysis ever since. A bout with pneumonia when he was 3 months old led his doctors to remove his kidneys, and he was hospitalized for another two weeks.

He must be on dialysis for about 10 hours a day, usually when he’s sleeping, and he’s also hooked up to a feeding tube at that time, as well.

During the day, however, Rost said that Eli is an energetic 2-year-old.

“He doesn’t feel that great all the time, but you would never really know it, though. He seems like a pretty normal kid. He has a ton of energy,” Rost said. “He gets into everything.”

“If you just met him today when I wasn’t doing any of those things with him, you wouldn’t even know anything would be wrong with him. He’s tiny because he really hasn’t grown that much, but to people who don’t know him, he seems like a completely normal kid.”

Eli’s level of energy is so high that Rost jokingly said she’s worried about how much more active her son will be after the kidney transplant.

“The doctors have told us that as long as everything goes well, he should be on a pretty normal schedule. He’ll have to have medicine, but as far as his quality of life, he’s going to have a ton more energy, which I’m kind of nervous about,” Rost said.

Rost and her husband both began testing in January to see if they were matches to be donors for Eli. Both were successful, but because Rost’s kidney would be a more suitable size for Eli, they decided that her kidney would be the one transplanted.

“We don’t know how long the kidney will last. They give us a region between five and 30 years, so we have no idea. Because I’m a very good match, they think it will be closer to 30 years, but they just don’t know,” Rost said.

Another Macomb Township resident, 28-year-old Shannon Brink, is hoping to also be a recipient of a kidney transplant. She also had a team of more than 40 individuals at the kidney walk; they raised more than $11,000.

Brink experienced her first kidney failure as a baby, but she had no issues until a checkup when she was 18 years old.

“Somehow I just started recovering. I didn’t know I had kidney issues until I was 18, when I went to the gynecologist and they said my kidneys were functioning at 38 percent,” Brink said.

Brink is now on the transfer list for a transplant, and she and her cousin are currently undergoing testing to see if they are matches.

“If she does match, then we can do the transplant. If not, then we need to find someone else,” Brink said.

For both Eli and Brink, there would still be a great deal of uncertainty for life following a kidney transplant. There is no guaranteed amount of time for how long the kidneys will last, and for Eli, who has no bladder function, there will be other complications to tackle later in life.

In addition to raising awareness for kidney disease, Rost said the kidney walk provided a chance to meet and hear from others who are going through similar experiences.

“It’s very nice to talk to other families who are going through the same thing because it’s not that common,” Rost said. “It’s not like cancer that everyone pays attention to and knows about. A lot of our friends really don’t understand what we’re going through. They don’t know much about it, so it’s really nice to meet people who do.”

The 7,000 walkers and supporters raised a total of $520,000 for the National Kidney Foundation of Michigan.