His brother had died, his father had gone and his mother was in a wheelchair like him. Jeni was experiencing similar isolation for different reasons. Watching children die is hard. At ten, Mattie was admitted to hospital with acute breathing problems.
He went into a coma, almost died and spent three months in intensive care. When he finally made a tentative recovery in the summer of , a doctor suggested that they spoke to a make-a-wish charity about providing Mattie with a much-deserved morale boost.
Instead, he found himself debating the challenges of world peace with a highly intelligent year-old. The granting of wishes two and three followed. Then, shortly after Mattie was discharged from hospital, Oprah invited him to be a guest on her show. Her team arranged for him to be flown to Chicago by air ambulance and booked into a hotel suite. The moment the interview aired, Mattie found himself projected on to the world stage.
In the ensuing months he gave scores of television and newspaper interviews and met another of his heroines, Maya Angelou, who offered to write the foreword for his next book. Bill Clinton and J K Rowling were among those who corresponded with him.
Mattie was never anything but my little boy, and I was never anything but his mum. But we were able to relate beyond that because we both knew how fragile existence is. A champion is… Someone who overcomes challenges Even when it requires creative solutions. A champion is an optimist, A hopeful spirit… Someone who plays the game, Even when the game is called life… Especially when the game is called life.
He was growing up and dying simultaneously. He died in hospital in June that year with Jeni lying alongside him to feel his final heartbeat. Local television stations interrupted programming to announce his death. At his funeral the following week, thousands lined the streets.
Then Jeni went home with her close friend Sandy, who has been her lifeline for the past 20 years. Baptized at birth and confirmed in the Catholic Church at the age of 8, Mattie enjoyed a close friendship with God throughout his brief life. He said that his spirit was strengthened by the Saints and the Holy Eucharist and that he lived with a purpose given to him by God.
As a spokesperson for disability and peace organizations and a catechist in his parish CCD program, Mattie became a source of hope and peace for people of many ages and abilities and aspirations, bringing diverse global neighbors together in prayer and purpose. Mattie died on June 22, , just three weeks before his 14th birthday. He is buried at the Gate of Heaven Cemetery in Wheaton, Maryland, alongside his three siblings — Katie, Stevie, and Jamie — who predeceased him during young childhood.
The Mattie J. Stepanek Guild was initiated on September 21, — the Feast of St. Matthew the Apostle and the International Day of Peace. He is the youngest of four children, each of whom died during childhood from an inherited rare and fatal neuromuscular disease called Dysautonomic Mitochondrial Myopathy. His mother, Jeni, did not know she carried the gene for the disease. She was diagnosed as an adult after all four of the children — Katie, Stevie, Jamie, and Mattie — were born.
Like his siblings, Mattie needed a tracheostomy tube, ventilator, oxygen, central lines, feeding tubes, monitors, medicines, routine blood transfusions, a wheelchair, and other life supporting medical interventions. He told Winfrey after the Sept. Young Mattie started spouting poetry at age 3, when his brother Stevie was dying. His mother began writing down what he said until he could do it himself. Everybody has one. The parents subsequently divorced. Outside, Mattie was only able to move about in his motorized wheelchair.
Even though Mattie battled a terminal illness for many years, Mattie never saw his condition as an obstacle between him and his goals. He began writing when he was about 3 years old. Before he passed away in June, , Mattie had written thousands of poems, dozens of essays and short stories, and presented a bound anthology of his writing to the Library of Congress.
He received many awards for his writing, including the Melinda A. A Champion is a winner, A hero Someone who never gives up Even when the going gets rough. A champion is a member of A winning team Someone who overcomes challenges Even when it requires creative solutions.
A champion is an optimist, A hopeful spirit Someone who plays the game, Even when the game is called life. There can be a champion in each of us, If we live as a winner, If we live as a member of the team, If we live with a hopeful spirit, For Life. During his short lifetime, he enthusiastically participated in fundraising events to help find a cure for neuromuscular diseases, and to encourage children and families suffering from these diseases to celebrate life until a cure is found.
We must always listen to the song in our heart, and share that song with others. Little Mattie has somehow acquired more wisdom in his short life than most of us do after decades of living.
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