Four-year-old Jonathan Faiola’s kidney disease diagnosis before he was even born brought the National Kidney Foundation of Michigan (NKFM) into his family’s life. Nick and Amanda Faiola of Brighton knew something was going on early in her pregnancy. At eighteen weeks, the Faiolas were told that Jonathan had severe hydronephrosis, a type of chronic kidney disease. With hydronephrosis, urine stays in the kidneys instead of emptying completely out of the body. This causes kidney swelling and urinary tract infections (UTIs), which Jonathan experienced twice in his infancy.
For the first year of life, Jonathan drank a salt solution along with his formula so he could get enough sodium. Once he started eating solid food, he could get sodium from his diet. At age 2, he had repair surgery on his right ureter (the tube that carries urine from the kidney to the bladder). He will eventually need to have his left ureter repaired. He is monitored regularly to stay on top of any disease progression. The family has taken a “wait and see” attitude since the prognosis for hydronephrosis is different for everyone.
Amanda, a local preschool director, talks about Jonathan’s kidney disease diagnosis, “You’re young parents; you don’t know what’s going on; you don’t know where to turn.” Nick, a bank manager, found out about the NKFM from a colleague. “It’s nice to just have someone say, ‘Let us know what’s going on and if we can help, we’re here,’” states Amanda. “With kidney disease, you don’t see how sick the kids really are on the inside.”
Nick: If you go at a lot of these things blind, it’s scary. But just knowing NKFM is out there is great.”
The Faiolas became interested in helping the NKFM and ventured out on their first Kidney Walk in 2019. He and Jonathan even ended up in the Kidney Walk video!
Amanda: “Going to the Kidney Walk was an eye opener because we don’t know anybody other than Jonathan with kidney disease. You see that it’s not just affecting you. You see how many other people have the same thing or something similar. With kidney disease, you don’t see how sick they really are on the inside.”
The family was ready to volunteer again for the foundation in 2020 but the pandemic prevented that. Now, in 2021, Jonathan is 4, his brother Domenic is 8 and his sister Haley is 10. Nick states, “Now that the kids are older, we have the emotional capital available to give back. We can get involved and do some other things.”
Both Nick and Amanda also appreciate that the NKFM is an organization serving people locally. Nick: “The NKFM is well run… several people have reached out to us. We like the cause. A lot of it’s educational, which is very important.
Speaking about the NKFM’s mission to help all people with kidney disease, Nick states: “A lot of people don’t have access to resources. So to have the NKFM support them and provide help is a really great thing.”
Visit here to find out about resources at the NKFM.