Jeni Stepanek was interviewed on "World Over" and I found her courage and loving acceptance of so much hardship, extremely inspirational.  She is a PhD and despite mobility issues (she has the adult form of the same muscular dystrophy Mattie had), she travels all over, bringing joy to many, just as she brings joy to her family.  Mattie, her youngest, was 4 years old when she, herself, was diagnosed with this disorder but she continued as super Mom, author and advocate.  By the time Mattie was called home to the Lord at the age of 14, Jeni had lost three other children from the same disorder.  I hope their story inspires you as much as it inspired me. Jeni's book about Mattie is highly recommended.  You can purchase the book on Mattie's website (below) - it comes in paperback and audio books.  You can listen to an inspiring speech by Jeni (below) also.

From Mattie's website

The Legacy of Mattie J.T. Stepanek and Heartsongs
 

The job of the poet
Is to leave stains of the storms
Yet echo laughter of the light
That is seen from the soul. . . .
The job of the poet
Is to . . . capture
And to spirit and to script
The pulse of life.¹

When her son, Mattie, was born with a rare disorder now known as Dysautonomic Mitcochondrial Myopathy, Jeni Stepanek was advised to put her child in an institution and “let nature take its course.”  Instead, she nurtured a boy who grew to become a young man who transformed his hardships into a message of hope and peace that touched millions.

Mattie J.T. Stepanek was a bestselling author, publishing six collections of his Heartsong poetry and one collection of peace essays that all became New York Times bestsellers and eventually sold more than 2 million copies; he gave inspirational talks to thousands; he became the National Goodwill Ambassador for Jerry Lewis’s Muscular Dystrophy Association; and he knew his heroes—Oprah Winfrey, Jimmy Carter and Maya Angelou—personally. But his legacy lives strongest in his choice—his decision to celebrate life and perceive it as a blessing even during the most painful moments.  It is that legacy that Jeni Stepanek celebrates with Messenger.

Telling the story of Mattie as only his mother could, in Messenger Jeni Stepanek recounts the intimate moments of this little boy’s life, a life that became larger than life as his message spread across the world. In describing her son’s trips to the beach, his love of reading, his obsession with Legos, his planning of a surprise birthday party for his mom—we see an ordinary child who just so happened to be facing a life-threatening health situation. In recounting Mattie’s sadness at losing all of his siblings to the same disease, his astonishing intellect, his belief that he was channeling God’s message into his poetry, and his dedication to spreading the message of peace he so believed in, we see the extraordinary boy who lived every day given to him to the fullest.

Messenger is the full story of Mattie “the poet, the peacemaker, and the philosopher who played.”  Featuring numerous never before published poems by Mattie, journal entries, essays, and e-mail exchanges with many of his famous friends, Jeni shares Mattie’s passion for living, his never ending hope for peace, and his spirit that spread joy in a life that medicine swore held no promise of hope. 

Jeni Stepanek, Ph.D., is the mother of Mattie Stepanek, the New York Times bestselling author and humanitarian, who passed away in 2004 to Dysautonomic Mitochondrial Myopathy. Jeni lost three other children to this same neuromus­cular disease and has the adult-onset form herself. She holds a doctorate in early childhood special education and is an award-winning speaker, writer, and advocate. She lives in Rockville, Maryland.

Jeni on Ted for teens

Please see Mattie's website

http://www.mattieonline.com/