So they donated his body — to 100 different recipients. Now, 10 years later, they have an extraordinary friendship with several of the people who received Sean’s major organs. They consider them extended family — and one of them, essentially, became like the daughter they never had.
‘I felt like I knew her forever’
Stefania DeMayo, 37, was dying before she received Sean’s heart in 2008. She now calls the Cleggs “mom and dad,” and her children — who, she had after the transplant — consider them grandparents.
DeMayo said their bond was “instantaneous” when they met.
“Gail walked through my door, and I hugged her and could not let her go,” DeMayo, said of her first meeting with Gail Clegg. “I know it sounds corny, but I felt like I knew her forever.”
At that first meeting, they sat at DeMayo’s kitchen table and talked for hours. Gail brought pictures of Sean, which are now displayed across DeMayo’s house.
The other members of the “extended family” include the recipient of Sean’s right kidney — a woman whom the Cleggs went on a European vacation with last year — and a man who has one of Sean’s lungs.
The Cleggs are also in touch with the woman who got Sean’s left kidney, despite her not speaking English.
Gail Clegg, 52, said she realizes how unusual it all is.
“They always tell me I saved their lives,” Clegg said of Sean’s organ recipients. “I say it saved my life, too. Sean is gone but definitely not forgotten. All these other people are living because of him.”
The friendships are easy and natural, Clegg said, and also her way of holding tight to the legacy of Sean, a sweet-tempered boy who loved sports and Harry Potter and was known for going out of his way to help friends.
‘During a really dark time in their life, they did a good thing for somebody else’
DeMayo was a 27-year-old woman whose heart was failing in 2008 when her desperate prayers were answered. When she found out the heart came from a 14-year-old boy, she was acutely aware that this time of joy in her life must have been gutting for the family who lost their son.
Once her surgery at Newark Beth Israel Medical Center was a success, DeMayo wanted to reach out to that family. She said she knew that, like many others, she could have died while waiting for a heart transplant, and she wanted to thank the donor’s family for their generosity. But her husband, Richard DeMayo, 43, who owns a pizzeria, told her not to jump too fast.
“He said to me, ‘You have to give this family a chance to grieve,’” she recalled. “But I felt like I needed to thank them and let them know they saved my life. During a really dark time in their life, they did a good thing for somebody else.”
She didn’t know who the Cleggs were, but she was able to write them a letter through an organ-donor organization, NJ Sharing Network, that would deliver it. Gail Clegg said she and her husband, who is a night manager at a supermarket, immediately responded.
In fact, Gail Clegg had already decided she needed to know where her son’s organs went.
“I thought that whoever gets his organs, we want to meet them,” she said. “We didn’t know at the time that’s not normal. That’s what we wanted to do, and nobody was going to tell us no.”
Shortly after the transplant, DeMayo became pregnant and gave birth to twins. It was an incredible feat: Her doctors believe she is the first woman to have twins after a heart transplant.
“None of us were enthusiastic about her pregnancy that close to post transplant,” said one of her doctors, Mark J. Zucker, director of cardiothoracic transplants at Newark Beth Israel Medical Center.
The twins were born prematurely, but everything turned out fine. And once the babies’ health stabilized and the DeMayos brought them home, the Cleggs dove right in to help. They regularly made the hour-and-a half drive to babysit Melania and Natalia, who are now 8.
They still often visit on weekends to take their “grandchildren” to the toy store or just hang out. The DeMayos also have a son, Luciano, who is 4. The Cleggs’ younger son, Brian, now 23, is Luciano’s godfather.
“As the years have gone on, we have become closer and closer,” said DeMayo, a stay-at-home mom living in Wayne, N.J., who also travels to the Cleggs’ home for visits. “They are like very close family to me.”
Clegg describes DeMayo as “the daughter I never had.”
Several times a year, the Cleggs will have family get-togethers and include the DeMayos, as well as the other donor recipients. DeMayo and Melissa Coleman, who has Sean’s right kidney, have become friends, often texting each other about their lives. And the women are also friends with Craig Lawton, the lung recipient.
“I have a connection with them, because we were all in the same boat. We were all dying,” said DeMayo. “One person brought us all together. That one person saved all of our lives.”
‘I never envisioned my life this awesome’
Coleman, 46, who endured dialysis for 10 hours each day before her transplant, said she feels “so blessed” to not only have one of Sean’s kidneys, but also to have the Cleggs in her life. “I never envisioned my life this awesome,” she said. Coleman said she is often overcome with emotion when Gail Clegg thanks her, because she said the Cleggs are the ones who deserve the gratitude. “She tells me all the time I’m a ‘gift’ to her,” said Coleman, who carries a photo of Sean with her wherever she goes.
Lawton, 64, said that after his transplant, it took him a little while to respond to the Cleggs’ offer to meet, because he wanted to physically heal and also be in a strong mental place. He did not imagine he’d become so close with the Cleggs that he’d consider them family.
“It’s wild. I got real close to Gail and her husband,” said Lawton. “On the one hand, you feel bad for them, because you can’t imagine what they’ve been through, and on the other hand you’ve been given a gift. You better take care of that gift.”
Sean’s corneas ended up in Egypt, while his bones, skin and other tissue were used to help more than 90 other people.
‘Create something that lives forever’
Gail Clegg said that when her son was alive, she always admired him for his extreme kindness. She said he was constantly lending an ear to friends or letting them borrow his things. That’s how she knows he would have wanted to be an organ donor.
“If somebody thinks of their son as a hero, what else could you ask for other than saving lives?” she said.
After his death, she found Sean’s own words as her guide. The same August 2008 day he walked out to ride his bike, he wrote on MySpace: “We all die … The goal is to create something that lives forever.”
Sean’s mother said she thinks he may have been talking about making music, which he liked to do. But she also takes his quote at face value.
“We made him live forever,” Clegg said. “With Stefania’s kids, he will live forever. We created that. That’s what he would have wanted, that’s the kind of kid he was.”