Staying 'Justin Strong': Muncie Central grad awaits a kidney transplant

MUNCIE, Ind. — Justin Gillespie's senior year at Muncie Central High School didn't finish up the way he had expected. Instead of going to prom, he ended up in the hospital, gravely ill, for almost a week — but at least he did get to go to his graduation.

A year later, the 2021 Central grad hasn't been pursuing some of the the post-graduation things he'd once planned — college, a job — and instead has been focusing on his health, and waiting for a kidney transplant.

Gillespie, the son of Garnisha Mason and Robert Gillespie III, has lived in Muncie all his life. As the end of high school approached in 2021, he began noticing inexplicable weight gain. "And then I woke up one morning and my feet were swollen all the way up to my kneecaps, so my mom was like, 'No, we gotta go to the hospital,'" he recalled. That's when he was diagnosed with a rare kidney disease, nephrotic syndrome.

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He still vividly recalls when that trip to the hospital happened. That was the day before the senior prom.

"I had the suit laid out and everything," he said. He spent six days in the hospital, and was discharged one day before he turned 18, then began dialysis on his birthday.

The weeks between that diagnosis and graduation were "very, very tough," for Gillespie, he recalled. He went back to the hospital with pneumonia, and wasn't discharged that time until the day before Central's commencement ceremony. "I didn't know if I was going to be able walk (at graduation) because my feet were swollen, so swollen. So there were questions on if I would be able to walk the stage.

"But it was something that I wanted to do, because I missed my senior prom," he added.

Since then, a lot of his time and attention have been taken up by his health. "Every day you're trying to understand more and more on what is it because it's all new to you: new diets and starting dialysis, trying to learn what that is while trying to still live day to day as normal as you possibly can," he said.

He's now waiting on a kidney transplant, a wait that could last one to three years, his mother said. On top of kidney disease, he was subsequently diagnosed with heart failure, raising the possibility he might need a heart transplant, too, she said.

Mason called her son's initial diagnosis "very overwhelming. Honestly, I was trying to be strong. ... So we joke now because I'm the crier, and he's like, 'Oh, toughen up, Mom,' stuff like that. Absolutely overwhelming, with him being my one and only child. It's pretty rough."

The family is now working with the Children’s Organ Transplant Association (COTA) to raise funds to help cover the cost of the eventual kidney transplant. The fundraising goal is $40,000, and online donations to the "COTA for Justin Strong" fundraiser can be made at cota.org/campaigns/COTAforJustinStrong.

Working with COTA for the fundraising could have even longer-term benefits for Gillespie, his mother noted. "We know that organs don't last forever," so if he needed a new kidney transplant 20 or 30 years from now, COTA would help again, she said.

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Donation boxes for the COTA fund for Gillespie are available at locations including Calvary Baptist Church, Carey’s Barber Shop, Buddy Love's Barber Shop, BE Beauty, Brothers' Barber Shop, Church of the Living God, The Barking Cow, Fleek Nation, Hair Life Studio, McAlister’s Deli, Guardian Brewery, Detail King, Safe Key Insurance and at Humana events.

Sales of "Justin Strong" T-shirts, hoodies and other merchandise and fundraising events are being planned, and his family and supporters plan to have a booth to provide information about kidney failure and free screenings along with merchandise sales at the Aug. 6 Fire Up DWNTWN festival.

Business interested in donating, sponsoring or assisting with upcoming events should contact community coordinator Janet Mason at masonjanet809@gmail.com.

Fundraising for the Justin Strong foundation has provided something to focus on while waiting months or years for the call about an available kidney, but it can also be "a little overwhelming" with the need to relive the experiences of the past year by sharing the story over and over, Mason said.

Looking ahead to life post-transplant, Gillespie said he intends to get back to the things he'd once planned to be doing by now: "Getting a job, going back to school and driving."

Contact content coach Robin Gibson at ragibson@gannett.com or 765-213-5855. Follow her on Twitter @RobinGibsonTSP.

This article originally appeared on Muncie Star Press: Staying 'Justin Strong': Muncie Central grad awaits kidney transplant