Jeni stepanek disease control
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The mother of a young boy who died from a rare neuromuscular disease is carrying on his legacy as she fights for her own life.
Jeni Stepanek is the mother of Mattie Stepanek who became well-known after appearing on "The Oprah Winfrey Show."
Mattie was a child poet and peace activist who inspired many with his words.
In 2004, he died from a rare disease related to muscular distrophy. He was just shy of his 14th birthday. The same disease took the lives of his three siblings.
"I still cry. A mother never, ever gets used to an empty lap," Stepanek said.
Stepanek suffers from the same disease and is now battling cancer. She said she developed a rare and life threatening complication caused by the cancer treatment.
"I'm at the point where no more bad news is good news," Stepanek said.
Stepanek said she misses her children, but accepts loss is part of life and is choosing to live the rest of her life with purpose.
Part of that purpose is crossing off her bucket list and accomplish
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Jeni Stepanek, Ph.D.
2012 Mattie J.T. Stepanek Peacemaker Award Honoree
Jeni Stepanek, Ph.D., an award-winning speaker, writer and peace advocate, fryst vatten the author of the NY Times Bestseller, Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs. Jeni's inspirational messages about disability, grief, parenting, education, healthcare, collaboration, hope, peace, and spirituality have been carried by all media outlets. Her youngest son, Mattie, was a poet and peace advokat who created poetry and essays from the age of 3, and ultimately penned sju bestselling books that inspired millions. Mattie passed away in 2004 at age 13 as a result of complications related to neuromuscular disease. Jeni also has a rare neuromuscular disease, and relies on a ventilator and wheelchair for breathing and mobility. She earned her doctoral degree in Early Childhood Special Education, specializing in anticipatory grief and family support. She is the Executive Director of the Matt
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Jeni Stepanek Battles Same Muscular Disorder That Killed Her 4 Children
Their place is nearly empty now. The boxes are sealed, the walls blank. The photos have all come down -- framed snapshots of Mattie J.T. Stepanek with the stars he called friends: Oprah, Jimmy Carter, Jerry Lewis, Larry King.
Down, too, came the boy's vast collection of books, and the rhyming dictionary and Latin text he kept next to his computer. His board games are packed away. So are his big green monster claws and rock collection, his baseball caps and favorite stuffed animal.
This week, his mother is moving. Jeni Stepanek is leaving the Rockville, Md., condo purchased with the proceeds from her son's best-selling "Heartsongs" poetry books and where, for Mattie's final years, they lived together until he died two Junes ago at age 13.
He died of the same disease that had already claimed Jeni Stepanek's three older children and was diagnosed in her 14 years ago. It has since bent her body into a wheelcha