Jimmy Carter and Mattie Stepanek: The president's special friendship with terminally ill boy

ATLANTA - Countless lives all around the world were touched by Jimmy Carter, but the former president had a special relationship with one boy, Mattie Stepanek.

Stepanek was diagnosed with dysautonomic mitochondrial myopathy, a rare genetic disease that impaired his heart rate, breathing, blood pressure, and digestion. It was the same disease that killed his three older siblings.

In 2001, Stepanek was in the hospital when he was approached by the Make-A-Wish Foundation. He had a request: to talk about peace with Carter.

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Speaking to FOX 5's Alyse Eady, Mattie's mother Jeni Stepanek said that her son first learned about Carter when he was 6 years old for a school project on peace.

"I remember him saying to me - he had read a newspaper article that was about a peacekeeping mission that Jimmy had done in Africa," Jeni Stepanek said. "What struck Mattie was that when he was asked about his success with the peace that he had negotiated here, he said, ‘Mommy, what Jimmy Carter said is look what these people have chosen for their country.’"

She said from that moment, Mattie was drawn to Carter's mission. 

"He said, ‘He’s humble. He's purposeful. He's really trying to create peace, not just be known for creating peace," she said.

By the time Mattie was 10, he knew everything about the former president.

When Carter learned about Mattie's request, he agreed to a 15-minute phone call. The former expected to be asked about peanut farming and the presidency, but he came out extremely impressed by the boy.

"At the end of it, Jimmy said ‘Can I call you back?’ and they exchanged phone numbers, and the rest is history," Jeni Stepanek said.

A surprise presidential meeting 

Over the next few weeks, the pair exchanged phone calls and emails discussing their desire for peace across the world.

Carter and Mattie had the chance to meet on "Good Morning America," though the former president recalled that the boy originally thought he was a presidential impersonator.

"Later, when it proved to be me, he told Jeni, and Jeni told me that that was the first time in his life, and maybe the only time when Mattie was speechless," Carter recalled. "But we exchanged greetings and formed, I would say, an instantaneous bond of love."

Carter wrote the forward for Mattie's poetry collection "Journey through Heartsongs," and they ended up writing a book together, titled "Just Peace."

Mattie Stepanek died in 2004 from his disease. Carter gave the 13-year-old boy's eulogy.

"Since I left the White House, my wife and I have been to more than 120 nations. And we have known kings and queens, and we've known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek," Carter said.

He described Mattie as "an angel of God, a messenger of God."

Carter's continued friendship

.Following Mattie's death, Carter remained close with Jeni Stepanek. 

Jeni has the adult version of the same form of muscular dystrophy, and she said that Carter helped her immensely following her son's death.

"Jimmy began calling me and writing to me, and he really helped me find my purpose in the world beyond being Mattie's mom," she said.

He helped her create Mattie Stepannek Peace Foundation,, a nonprofit to continue Mattie's legacy and his dream of peace.

"He and I became very dear friends in the last 20 years, and I'm going to miss him terribly," she said.

Stepanek was diagnosed with cancer in 2015, the same year that Carter announced that he was going through cancer treatments. She says that Carter got a copy of her chemotherapy schedule and would call her before treatments.

"He would call me on the phone and say ‘How’s my sweetheart? You got this. We're in this together,'" she recalled.

You can learn more about the Mattie Stepanek Peace Foundation and how you can get involved on its website.

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