How Jimmy Carter Formed an Unlikely Friendship with a Terminally Ill Boy — and Brought Joy to His Final Years (Exclusive)

Mattie Stepanek first learned about Jimmy Carter when he was just 6 years old. While most kids his age might not be interested in a former U.S. president, Mattie was different.

“He said, ‘Mommy, he’s humble. He’s not just a peacemaker, he is not just a world leader, he’s not just smart. He’s humble,'” Mattie’s mom, Jeni Stepanek, tells PEOPLE.

Mattie was diagnosed with a rare form of muscular dystrophy called dysautonomic mitochondrial myopathy — the same illness that had killed his three older siblings, and one that required him to live his life in a wheelchair attached to a number of medical machines.

It was in the hospital, when offered the chance to make a last wish, that he chose the one thing he wanted more than anything else: to meet President Carter.

Mattie first spoke to the former president in a brief 15-minute call that his hospital had organized as one of his last wishes.

But what was meant to be a phone call to a dying child went very differently than anyone could have foreseen — with Carter being just as impressed by the young boy as Mattie was by him.

When Carter finally had to end the phone call, he asked Mattie if he could call him back. “Mattie was like, ‘Well, I am in the ICU so I don’t have a phone.’ So the president gave Mattie his private phone number, his private email, his private everything,” Jeni recalls.

Eventually, the two became confidants, swapping phone calls and emails, and bonding over shared interests: baseball, practical jokes and peace.

“They would talk about baseball, about nature. They would talk about peace and challenges to peace and how you must jump into these opportunities,” Jeni tells PEOPLE.

Seven months after their first phone call, in 2001, the two finally met in person at a taping of Good Morning America.

Mattie didn’t know Carter was there, and the surprise meeting would go on to become one of the show’s most memorable moments, Jeni says.

“Mattie didn’t know what to do with himself,” she recounts. “This was the first time I saw my son be completely speechless.”

When the show went to a commercial break, Mattie turned to the former president with one request. “Mattie said, ‘Can I touch you?’ And Jimmy Carter just reached out and hugged him,” Jeni says.

Over the next few years, Mattie went on to publish seven best-selling books of poetry and peace essays — including one, Just Peace, written in collaboration with Carter.

Mattie died in June 2004, at age 13 — ending a life that Jeni speculates would have been cut even shorter if not for the former president. “If it hadn’t been for Jimmy Carter, I think my son would have given up. Instead, he lived until 2004. He didn’t spend his year dying, even though his body was falling apart. He lived every moment.”

Carter would deliver Mattie’s eulogy, in which he called the boy “the most extraordinary person I have ever met.”

After her son’s death, Jeni started a foundation called the Mattie J.T. Stepanek Foundation, which aims to continue her son’s legacy. She tells PEOPLE she kept in contact with Carter even after Mattie died.

“[Carter] saved my life when I needed a reason to get out of bed,” she says. “He sustained me and gave me purpose and he kept reminding me that Mattie was a human being. He said, ‘He’s came and gone, but his legacy lives through you, and if you give it that breath and that depth, it will continue beyond you as well.'”

June marked 20 years since Mattie died. The intervening years have not been without hardship for Jeni, who has an adult onset of the same rare form of muscular dystrophy, and was diagnosed in 2015 with a rare and aggressive form of cancer.

The odds for her survival were not good, though her days were made better by Carter himself, who obtained a copy of her chemotherapy schedule and would call each morning before she went in for the treatment.

“He was always like, ‘How’s my sweetheart?'” she says, noting that Carter was going through his cancer treatment at the same time.

“I adore him and I know he adores me,” she tells PEOPLE. “He continued to support — in his quiet humble, genuine, unassuming-but-authentic way — what matters most: peace and people.”

The news in February 2023 that Carter would begin receiving hospice care, she says, was very difficult — “I love this man, a dear friend.”

But she says Carter’s legacy, like her son’s, will live on.

“They both created their own legacy when they were alive,” she says. “They didn’t leave it up to us. They both wanted to be known for peace.”