About Jeni Stepanek
There is nothing so tragic, so contrary to the natural order of things, as the death of a child before a parent. Jeni Stepanek has endured this agony, not once, not twice, but four times.
Ms. Stepanek lives with mitochondrial myopathy and uses a power wheelchair for mobility. Despite doctor's reassurances that each subsequent child would be healthy, the infant-onset form of her disease led to the early deaths of three of her children. Her fourth and youngest child, Mattie J. T. Stepanek, was Jeni's "unintended miracle," and when he, too, was diagnosed, Jeni devoted everything she had to building a medical and spiritual support team for the enormously gifted and loving child.
From the start, Jeni encouraged Mattie to express his feelings in words, and showed him how he could use poetry not only to cope with his own challenges, but also to share his tremendous joy for life with the world around him. By the time he was twelve years old, Mattie had published five New York Times-bestselling books of his poetry and had shared that poetry on Oprah and Larry King Live. Millions of people heard Mattie's "Heartsongs," and were moved, comforted, and inspired by his words. Indeed, his contribution continues even after his passing with two new books, Reflections of a Peacemaker: A Portrait Through Heartsongs and Just Peace: A Message of Hope.
We would all be proud to claim a life as rich and full as the one Mattie achieved during his too brief thirteen years in the world. Since his death, Jeni Stepanek's message of compassion continues to touch the lives of millions of people around the globe who have come to know and cherish her and her young son. She recently completed the editing for Mattie's final two manuscripts, and she is currently completing a doctorate in early childhood special education with a specialization in anticipatory grief. Her mission is to help children with disabilities, their families, and the caregivers and professionals working with these children and families to cope with their unique challenges and embrace the courage, hope, and faith that made her own son's life a beacon to us all.
To read more about Jeni Stepanek on myhero.com