Nearly four years ago I had the privilege of interviewing then 10-year-old Mattie Stepanek and his mother Jeni, both of whom suffered from a rare form of muscular dystrophy. Mattie went on to become a best-selling author and peace advocate. He appeared on television with Larry King, Oprah Winfrey and Jerry Lewis.
Last week, at age 13, Mattie lost his battle with the disease that earlier had taken the lives of three siblings, all before age five. His funeral Mass was offered on June 28 at St. Catherine of Laboure Church in Wheaton. A fire truck, at Mattie’s request, carried his casket from the church to the cemetery.
In an earlier interview, Jeni recalled discovering that something was wrong with her when she was always in pain, short of breath and physically exhausted. She was diagnosed with muscular dystrophy at age 31 and needed to start using a wheelchair at age 35. Jeni said it was called a “fluke of nature” when her oldest child was diagnosed with the disease. Doctors told her it was a “recessive gene” when her second child came down with the same disease and there was a 25 percent chance that her other children would get it.
The Stepanek’s heartbreaking story was one of four segments featured in the 1998 documentary Final Blessing, a film produced by Martin Doblmeier and funded by the Catholic Communications Campaign. The program examined how individuals facing incurable illnesses can have a positive impact at this stage of their lives.
Doblmeier said in an earlier interview that as the body weakens, the potential for personal and spiritual growth deepens. Such healing can be the “final blessing” in their otherwise tortured lives.
The Stepaneks never sought publicity for their story, but agreed to cooperate with Doblmeier when he approached them about the film. Mattie was 6-years-old when Final Blessing was first being filmed in 1996. He remembered only his brother Jamie and did not recall his other siblings who died of the same disease.
Doblmeier remained close to the Stepaneks over the years and was amazed at the courage they displayed, despite the obvious physical and mental hardships. The Stepaneks lived life enthusiastically, having moved beyond their initial anger with God to a mindset where they felt God's loving care and celebrate each day that they have. Jeni was proud that Mattie possessed a genuine spirituality unheard of in children his age.
He was a voracious reader, who was home schooled by his mother since age 9. He told me that he had read thousands of books in his short life. “He keeps the public library in business,” said his mother. “The librarian is always glad to seem him. He’ll take out a few dozen books at a time.”
Mattie read all the classics, but his favorite authors were Robert Louis Stevenson and Jack London. He received permission to receive the Sacrament of Confirmation early and took the confirmation name Thaddeus, for St. Jude Thaddeus, the patron saint of hopeless causes. “I pray to him all the time,” he said.
Near the end of our interview, Mattie told me he wanted to be a peacemaker and writer when he grew up. “I think Kosovo and Africa need the most help,” he said. Peace has come early for Mattie Stepanek. May his courage in the face of great physical hardship be a final blessing for us all.
(This article courtesy of the Arlington Catholic Herald.)