pernah lagi nonton oprah, ada anak extraordinary yg cerita dia nulis buku, namanya mattie stefanek, seluruh badannya dipenuhin selang2 bahkan satu nembus lehernya dan dia masih semangat cerita ttg world peace and love.. i got interested, n watch the whole show. malah jadi sering bahkan bukan cuma di oprah... di larry king live juga ada. trus ada kesempatan nitip buku diluar, i got two books of his. terakhir ngeliat dia diwawancara oprah, lagi keputus2 nafasnya. bahkan pd satu show, oprah minta semua take a moment untuk doain sahabat kecilnya, mattie.. lama2 lupa aja soal mattie, except bukunya just hanging there in my bookself. trus sebulan lalu monik nanya, eh mattie stepanek apa kabar ya?.. kakak cari ka, browse aja... dan lupa, baru inget sekarang...lagi ga byk kerjaan. and this is what i found...
Mattie Stepanek died at Children's National Medical Center in Washington D.C. on Tuesday, June 22, according to a statement from the hospital. He had been hospitalized since early March for complications related to the disease that weakened most of his body's major functions. Mattie was 13 and is survived by his mom Jeni.
Mattie J.T. Stepanek is a 13-year-old young man who was born with a rare neuromuscular disease called dysautonomic mitochondrial myopathy. His disease is one of the 43 types of diseases being researched by the Muscular Dystrophy Association.
Mattie has also shared his messages of hope and peace on many television programs. He has been on the Oprah Winfrey Show, Larry King Live, Good Morning America, Primetime, The Today Show, and many other programs many times. Every year, he also helps with the Jerry Lewis Labor Day Telethon. In 2002, he drove cross country with his mom, and friends, Sandy and Chris, to be in Los Angeles for the Telethon.
He loved getting to see his country coast to coast from the van. In 2003, he was unable to travel because of a decline in his health, so he enjoyed co-hosting all 21 hours of the local Baltimore, MD station telethon.
Mattie feels very lucky to have met many wonderful people during his journey through life. He has become close friends with lots of great people, including Jimmy Carter, Oprah Winfrey, Larry King, Christopher Cross, Lance Bass, and Billy Gilman. During 2003, Mattie and Billy Gilman collaborated on a CD project, Music Through Heartsongs. On the CD, Billy sings 12 of Mattie's poems that have been put to various styles of music, including Celtic, soft rock, Hawaiian, country, jazz, and pop-Christian style. One of his favorite tracks, I AM/Shades of Life, was made into a music video, where Mattie has a cameo.
Mattie also feels very blessed just to be alive at age 13. Children born with his disease do not usually live very long. Mattie knows that each day is a gift, and he makes the most of it. He says he gets his strength from God and his mom, and also from the people that become part of his circle of life. "People tell me I inspire them. And that inspires me. It's a beautiful circle, and we all go around together, with and for each other. What a gift," says Mattie.
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