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Thread: Peacemaker and Poet - Writer and Advocate Mattie Stepanek Dies at 13

  1. #1

    Peacemaker and Poet - Writer and Advocate Mattie Stepanek Dies at 13

    June 22, 2004- In his 13 years, Mattie Stepanek became nationally known as a "peacemaker and poet" whose story of living with a rare neuromuscular disorder led to five published books, numerous television appearances and a friendship with former President Jimmy Carter.

    The champion for muscular dystrophy lost his fight with mitochondrial myopathy this afternoon while surrounded by his mother and close friends, said the Children's National Medical Center in Washington, D.C. He would have turned 14 on July 17.
    A poet since the age of 3, Mattie started writing in part to help him deal with his disease, which causes generalized muscle weakness and difficulty in regulating such body functions as heart rate and breathing. He used a power wheelchair, ventilator and supplemental oxygen, in addition to other treatments.

    His mother, Jeni Stepanek, has a milder, adult-onset form of the disease, but was not diagnosed until her four children were born. Mattie's two brothers and a sister also died of the disease.

    The Power of Love

    Mattie's best-selling poetry books celebrate the power of love and peace. "This one explores loving life, loving people, loving God, loving peace," Mattie told ABC News' Good Morning America in March 2003 when Loving Through Heartsongs was published. article

    I saw Mattie on Larry King a few times and got his book Loving Through Heartsongs.
    He was an amazing person.

  2. #2
    God speed Mattie.
    And you are so right..amazing human.
    A great kid.

    Always a gimp..Never a wimp.

  3. #3
    When I see a story like this it reminds me that being SCI'ed is no picnic but aleast I'm alive.
    I wonder where the cure is for MD and all these other disabilities that seem to go on forever.

  4. #4

  5. #5
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    All:

    I had posted this in general news, but thought I might share since there is a thread on it in Life.

    I December of 2001 I was teaching blind and deaf children that were also mentally retarded and autistic. At that time, I had begun to have serious health complications that were not yet diagnosed. That holiday break I was to travel to the Cleveland Clinic with three of my siblings that were also symptomatic with a then not known disease.

    Prior to leaving on my journey, a student of mine gave me the book "Journey through Heartsongs" by a little boy named Mattie Stepanek. Mattie was living with a "Mitochondrial Disease" and writing his thoughts and views on life. Two of Mattie's siblings had already died, and his mother was very ill. Mattie was frequently in the hospital.

    While at the Cleveland Clinic, the neurologist confirmed what had already been suspected. I was diagnosed with a Mitochondrial Myopathy, unspecified, two weeks later I had two strokes, I became a Hemiplegic of the right side. A year of intensive therapy allowed me to regain much of the use of my right arm; however, I have never regained full strength or motor control of the arm. Little over a year later I had another stroke, this time on the opposite side of my brain. I lost the ability to use the other leg. At the same time I began to quickly loose respiratory function, and began loosing sensation and motor coordination throughout my body. My original diagnosis was changed after they found a variety of spots on my brian and spinal MRI. I was diagnosed with a progressive neuro deteriorating Mitochondrial Encephelopathy.

    Through all this, I read the poems of a very special little boy that made so much sense and was so at peace with such a harsh and scary reality. His poems helped to motivate and keep me balanced. He was able to cope with the knowledge that his body was failing him, and damn it, I aspired to do the same.

    I am so sad to say, that this little boy has died. I hope that you all can read or learn from his struggle. I have found the profound words within his poems have touched my heart and taught me so many lessons. I don't know how that student's mother could have known what that little book would come to mean to me, but, it has been something that I have turned to in my darkest and saddest moments...I hope that you too can find inspiration and hope in his words.

    http://www.cnn.com/2004/SHOWBIZ/book....ap/index.html

    See also

    www.mdausa.org

    Peace in all you do...
    jennifer

    "If I didn't think the convent would burst into flame upon your arrival I would shout "Get thee to a nunnery!" -NoDecafPlz

  6. #6
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    TVOT:

    The cure for MD or MS are locked in much of the same place that SCI research is locked. Stem Cells are being investigated for these diseases too, but, due to the current legislation and lack of funding...we are all fighting the same battle.

    jennifer

    "If I didn't think the convent would burst into flame upon your arrival I would shout "Get thee to a nunnery!" -NoDecafPlz

  7. #7
    ((((((Jennifer)))))))

    I am Charlie Bucket with a Wonka golden ticket in my pocket, the single largest lottery sweepstakes winner and Ted Williams ( Ok I don't get the last one either but...) all wrapped up in one extremely blessed man.

    By your side I fear nothing, want for nothing
    and love everything. (especially you)
    Each day is love enough for twenty lifetimes.

    Please forgive me for interupting Mattie's tribute. I had to let the world know how I feel.

    J.

  8. #8
    Mattie's bright light will forever shine in the hearts of many people. This lovely young man moved me with his wonderful words, sweet smile and gentle, kind, spirit.
    Shine on Mattie, shine on........

    With deep sadness,
    Leia

  9. #9
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    Mattie is/was what I would call an "old soul".

    The content of your character is your choice. Day by day, what you choose, what you think, and what you do is who you become. Your integrity is your destiny-- it is the light that guides your way." --Heraclitus

  10. #10
    Member Fritsch's Avatar
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    This is a big loss for us. Im sure his brother and sisters are glad to have him home

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