At the young age of six, Wilson and his family were thrust into a world they knew nothing about. A diagnosis of Minimal Change Disease turned their “normal” into “navigating the unknown.” In this episode, Andi shares their story of understanding, courage, and connecting with others.
Intro to Show Notes
“A lot of these kids who deal with this, deal with so much that you don't even scratch the surface of it.”—Andi Callaway
The Nephrotic Syndrome Foundation was born out of the impact of this story.
Listen in on the details of Wilson’s diagnosis, the ups and downs of treatment, and the never-ending fight for stability, hope, and health.
Show Notes
(4:07) An introduction to Andi’s family…
(5:35) Wilson starts showing symptoms that something is not right…
(7:21) The first diagnosis of nephrotic syndrome…
(12:40) “So for every single person, it's so different.” The importance of advocating for yourself…
(15:34) What happens to the siblings? And how do you explain a diagnosis to a child and extended family?
(17:20) The reality of Prednisone sets in…
(23:01) “I think something that is so hard for so many people is that hope or that expectation of, okay, well, this is what we're doing and it's gonna work.”
(27:15) Side-effects, insurance battles, and relapses…
(30:32) “We didn't really know that there was this world of chronic illness out there that could affect kids.” The challenges in coming to an understanding of the disease and explaining it to others.
(31:56) 504 plans and school hurdles…
(35:30) Managing family dynamics in the midst of chronic disease…
(38:59) Connecting, community, and crying…
(42:43) Getting Wilson into remission…
(48:08) The difficulty and weight of so many decisions…
(53:35) Relapse on the last day of 5th grade…
(54:28) “I'm consistently inspired by Wilson. Just like all these young warriors, his strength is amazing.”
(56:29) Disruptions, frustrations, and accommodations…
(1:01:43) A balancing act and the high end of Prednisone…
(1:04:46) The impact of the 2020 pandemic…
(1:10:08) Andi’s piece of advice…