With his unabashed enthusiasm for life Mattie has charmed everyone who has crossed his path. Mattie has inspired many people, young and old, to overcome every obstacle they may encounter and strive for their goals with dignity and humanity. Through Mattie's innocent and uncensored expressions about life as he sees it, and feels it, and thinks about it, I have been inspired to think more deeply about my own life.
Sometimes, it takes the wisdom of a child, for us to really appreciate what we DO have in life, and to remember to celebrate the gift of every day. Just wanted to say that in my personal life, Mattie is my hero and glad to see that someone else outside of my family and friends agrees.
Mattie is friends and schoolmates with my son. Please keep giving us more jewels like Mattie and his mother Jeni. I am 17 and I don't know how to tell people how I feel. I am a year-old single mother of a beautiful little 2-year-old girl.
In this last year, since separating from her father, and moving from the States back to my home in Canada, I have gone through many dark moments of fear and uncertainty. Reading Mattie's poems on your site really helped me see things in their true perspective. He is a true hero, an old soul, and a blessing to this planet. I wish I could hug that little man right now and breathe in his energy; he has touched my heart in a profound way. After seeing Mattie on the Oprah Winfrey Show, year-old Elizabeth Haestie wrote: I "met" Mattie for the first time today on the Oprah show - I am an year-old English lady, in good health, but sometimes feel somewhat depressed that I don't have a great many more years ahead of me in this life.
But Mattie knocked all those feelings out of my mind altogether, and I don't think they will ever return. I am an "old soul" too, Mattie, as you are, and I shall remember you and your mother all the rest of my life. You are my hero, too. He surprised me while I was taking photos by announcing the creation of a "Mattie Stepanek Champion Award" and presenting it to me. That brought a lump to my throat. Essays on Heroism. Watch our short introduction video for more information.
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.
Especially during his early and final years, he spent many months at a time living in hospital Pediatric Intensive Care Units. Mattie defied medical and developmental odds; not only did he live almost 14 years rather than the handful of hours anticipated early on, he was also developmentally and academically advanced, becoming a gifted writer, a respected teacher, and a spiritual and inspirational speaker. He faced many challenges, including living daily with a life-threatening condition and chronic healthcare needs, the loss of siblings and friends, financial stress and bullying, and other personal and community challenges.
Mattie was a deeply spiritual child, and his faith and friendship with God strengthened him in life and brought him joy and purpose. He was very active in church and volunteer activities. Despite disability, he enjoyed sports he earned a Black Belt in Hapkido , playing especially with stuffed animals and action figures when he was younger, and with Legos and video games when he was older , and being with friends he was a great practical joker.
Because of his disability diagnosis and the many medical complications, Mattie began receiving early intervention services from the Maryland Infants and Toddlers program when he was only a few months of age. She resolved firmly to have no more children, only to find herself pregnant again within the year. Mattie was born in July Jeni ignored medical professionals who suggested she put him in an institution, and consequently for almost two years lived on the edge of exhaustion, juggling long stays in hospital with either or both of her surviving sons.
Only then was the rare and poorly understood genetic mutation that she had passed on to her children identified. Dysautonomic mitochondrial myopathy affects the autonomic nervous system, which means automatic functions, such as digestion and body temperature, can suddenly go haywire and, at any time, the body might simply fail to breathe. The exact mutation was so rare that Jeni and her children are the only ones in the world who have been identified with it. Jamie survived until three and a half before passing away peacefully in his sleep.
It was the worst possible advice. They talked about Jamie and what it was like to feel sad after he died. Let us fully use The present, yet Not waste it. Let us live for The future, yet Not count on it. On a superficial level, Mattie was like every other little boy who loves playing with Lego and dinosaurs. But he was also a profound thinker who rapidly developed a powerful way with words. From the age of four, he was composing poetry; by six, he had won his first poetry competition.
By the age of nine he had bound his Heartsongs into five home-made volumes. 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.
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