As a mom, Andi Callaway has had a front-row seat to a nephrotic syndrome diagnosis. Here she illuminates the challenges, gaps, and need for community that she and her family have experienced, along with the solutions they are providing through the Nephrotic Syndrome Foundation.
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“There must be somebody else just like me. I really need to find another mom. I really need to find another six-year-old boy who's going through this.”—Andi Callaway
We’re always inspired by real-life stories of those who turn THEIR challenges into blessings for others. Here Jon, Bryan, and Andi expose the hard truths of navigating kidney disease.
Andi recounts how she had to become an expert on nephrotic syndrome when her son was diagnosed at the young age of six. She and her husband eventually founded NSF, the Nephrotic Syndrome Foundation, with the intent to improve the journey for others, one family at a time.
(2:50) Andi shares the childhood experiences that inevitably shaped who she is as a Mom.
(7:12) Running, and transferable life lessons…
(10:28) A good work ethic and track…
(13:54) “...finance is such an important background to have. And if you have it, you can do whatever you want…” Andi shares many of her jobs as an adult.
(17:55) High-speed DSL, start-ups, and 70 hours a week…
(24:24) A new journey begins…pulling back to raise a family.
(27:48) “I can get behind anything. I love everything...I love anything. I just think there's so much good out there. I can really find passion and interest in pretty much anything.” Andi shares about getting involved in local charities.
(29:35) Wilson’s symptoms begin to show up.
(33:53) What steroids do to a six-year-old…
(37:04) Desperately in need of connection… and the origins for NSF.
(40:07) “I kind of realized that what moved me so much... was really serving that mom and that dad and that patient, the family and the child and the siblings…”
(43:34) What is nephrotic syndrome, exactly?
(47:11) Relapses, triggers, and regimens—what works for Wilson?
(49:56) “I think that this is a marathon, not a sprint. And you know, we started that journey with a lot of grace for ourselves.”
(52:07) Starting with the Backpacks of Hope program…
(56:54) How COVID 19 has impacted NSF and bringing hope through connections.
(1:01:41) It’s the tip of the iceberg… how the healthcare system handles kidney disease.
(1:04:35) The power in parent communities…
(1:06:37) When the insurance company won’t cover a medication…
(1:09:27) How’s Wilson doing today?
(1:10:50) What does Go Be More mean to you?
If you liked this episode, check out our interviews with kidney disease survivors Jeremy Bedig or listen to Jon's Kidney Disease Story.
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Recorded September 9, 2020.
References:
Nephrotic Syndrome Foundation - website
Guest:
Andi Callaway - @nephroticsyndromefoundation
Hosts:
Bryan Green - @sendaibry, Go Be More Blog
Jon Rankin - @chasejonrankin, Go Be More
Links:
Production and Editing