Madison Rose never met Eli Setlock. But she will remember him for the rest of her life.
For the Setlock family, Madison and Eli’s involvement provides some sort of perspective, a sliver of meaning to an unspeakable tragedy.
When you put it all together, what you’ve got is an inspirational story of hope, empathy and courage.
“I think he would’ve been happy to donate his organs,” said Amy Setlock, Eli’s mom. “I honestly think he was there, that he was watching (during the procedure). I think it made him very happy to donate his organs. He was quite a character. He loved his friends and they loved him. I think he’s proud of the way we’ve dealt with his passing and the organ donations.”
“I know it’s an amazing story because I was blessed with this gift,” said Madison, a 24-year-old resident of Roanoke, Virginia, and the recipient of Eli’s donation. “But I’m even more blessed to know the amazing people behind this amazing person. It’s just the result of a huge act of kindness. This is their story as much as it is mine.”
Madison Rose is one of four recipients of Eli’s organs donated by the Setlock family at the time of his passing. His heart went to a 51-year-old resident of New York, one of his kidneys went to a 42-year-old veteran and his other kidney and pancreas went to a 26-year-old.
Eli was a vibrant and talented student-athlete who graduated from Annville-Cleona in 2017. As a Little Dutchman, Setlock competed on the baseball, boys’ soccer and golf teams.
“She’s a person we’ve never met, but who has a part of our child with her,” said Setlock of Rose. “I’m also happy for my kids (Caleb and Danika). I think it’s made a positive impact on the kids as well.”
“Without the donation, I think my health would’ve declined,” said Rose. “I don’t think I’d be here today wanting to meet Eli’s family. It’s a scary thing to think about. But that’s very much where my health was going.”
A tragic call
The date was Dec. 5, 2017. A couple of days before, in the middle of the night, the Setlocks had gotten the phone call that no parents ever want to receive.
Eli, a freshman at California University of Pennsylvania, had been found unconscious on his dorm room floor, with his inhaler laying nearby. Eli was rushed to Allegheny General Hospital in Pittsburgh.
The Setlocks drove to Pittsburgh immediately and were there for about 24 hours, before they were taken into a room for a consultation with doctors.
“They showed us tests they had performed on Eli’s brain, and Eli was brain dead,” said Setlock. “It turned out to be acute asthma. At that point, I said, ‘What about donating his organs?’ A month earlier, Caleb and I had a conversation about organ donation when I was renewing my driver’s license. We made the decision to donate Eli’s organs.
“I told them I wanted to be there to see him take his last breath,” he added, “and they told me it wasn’t possible.”
A hopeful call
The date was Dec. 7, 2017. Rose had received word that there was a possibility that her prayers may have been answered.
“When I think about it, I get so emotional,” said Rose. “I have never felt so good in my entire life. It was a struggle because I never felt so good. It’s four years later and I’ve never been in such good health. It’s what every recipient could’ve dreamed of. I’m very blessed for the gift of life.”
She and her mother Diane drove seven hours from Roanoke to Pittsburgh, with an overnight bag and hope as passengers. Rose had been on a waiting list for years, after undergoing an initial transplant of a partial liver from her brother.
“They were getting me ready for the operation and I saw Eli’s liver come in,” said Rose. “It made my heart drop. That’s when I knew it was real. Then they wheeled me into the operating room, and 36 hours later I woke up.
“I struggled a lot after the transplant because I was told it fit like a missing puzzle piece,” she continued. “I got a full liver, and I knew it came from a deceased person. I struggled with that. That was so hard for me to process.”
“It makes us feel good that we made the right decision,” said Setlock. “We can see how it has affected Madison’s life in a positive way. She said she felt guilty that getting a liver from someone who passed away allowed her to live. It gives his (Eli’s) life more purpose.”
Four years have passed since, and some healing has occurred. Through the Center for Organ Recovery and Education (CORE) program, the Setlocks have been able to connect with Rose, first through hand-written letters, then emails and texts and, recently, through Facebook.
The Setlocks never received responses from letters written to the other three recipients.
The next step with Rose would be a face-to-face meeting.
“For the last four years, until I got in touch with Madison, I always wondering what happened to those four people,” said Setlock. “I’m hoping the other three people are helped as well. I’m satisfied with having been in contact with one of the four people. I can see the effect it has had one on one person. I always wonder about the other three people. You don’t know what their lives are like. But I’m not sure I could handle knowing more than one story.
“In (her husband) Bo’s words, it feels like he has another daughter out there,” continued Setlock. “I know she is more than willing to meet us, and I think we will one day.”
“Originally, I got a letter from my donor’s family and even before I opened it, I bawled my eyes out,” said Rose. “I was still trying to process everything that happened. When I sat down to write back, I wrote my letter eight times. I didn’t know what to write. I knew they were grieving on the other end. I didn’t want to say the wrong thing.
“Since I’ve been conversing with Amy, I was excited to ‘friend’ her on Facebook,” she added. “Then I ‘friended’ Bo, and then Caleb and then Danika. I was learning about Eli’s family through every message.”
In many ways, Eli’s spirit lives on through Madison. The remarkable thing is that their personalities are very much alike – courteous, kind and an unwavering zest for life.
“Honestly, it’s like your heart is ripped out,” said Setlock of the loss of a child. “And I think it can happen again, all the time hoping that it never does. It’s pure hell. I’ve lost pets. I’ve lost grandparents. I’ve lost parents. But nothing has ever felt like when I lost Eli. It took me to a different realm.
“He was fun-loving. He was a character,” she continued. “He didn’t mind getting into trouble, in a good way. He was a middle child. He liked to spend time with his family. He was more of an athlete than a student.”
“Eli loved the beach. It was one of his happy places,” said Rose. “I want to meet them (the Setlocks) so badly. But I want to make sure it’s on their terms. We just started mentioning things. I want to make sure that they’re comfortable on the path they’re going on. This is a journey that so many people are on. It’s not just mine.”
A gift of life
Eli’s family wants people to know that organ donation is the gift of life.
“What I and Bo want, and what Madison wants, is for more people to be aware of organ donations,” said Setlock. “We just want them to see the positive impact it can make.
“Let’s face it, you’re not going to need these organs, and if you can help someone, it’s so worth doing. So many people have the lives they have because of organ donations like Eli’s.”
“There’s always that possibility down the road,” said Rose, of another organ donation. “But I’m confident Eli’s liver is here to stay. I’m going to make sure it’s not going anywhere. Organ donations save lives. It saved mine.
“What it’s helped me realize is that there are amazing people in the world. I have found an amazing family who has helped me live a more fulfilled life.”
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