Mattie's Friends Share
Their Thoughts

MATTIE STEPANEK (by Cyndee, Tucson, Ariz.)

I was neither surprised nor shocked by the news of Mattie's death on Tuesday. He had done a good job of preparing us for the day when his light would shine no more from this world, but be ever brighter from up above. Nonetheless, my emotions were raw and particularly sad about the loss of such a champion and hero. Mattie and I shared a common bond. We both LIVED with dysautonomic mitochondrial myopathy. I shall go on living and do my best to honor him and his legacy in the process.

I had the great fortune to meet Mattie once at a book signing at the Hagerstown, Md., Borders. It was and will always be my BEST day. Thanks Mattie! I will cherish the memories.

Jeni, you will always have a place in my heart. I'm sure the loss of Mattie is devastating and no words can do justice in this situation. Please know that you are loved and supported by the mito community, the world at large and by 4 mito angels who will never let you down.

Kristie (a.k.a. Hoodlum)
MDA mitochondrial chat host

Mattie has been an inspiration to me. Sharing his poetry with others has given me contacts that I treasure. My 18-year-old granddaughter has also enjoyed Mattie's poems and that is a great bond between us. Mattie was a genius with a huge heart. His understanding of life is remarkable for anyone of any age, but truly startling for one so young.

My thoughts are with Jeni. Losing four children and facing death from the same disease is an almost impossible situation to understand. Jeni, you will be in my thoughts and prayers, as well as on the e-mail prayer group at Downingtown (Pa.) United Methodist Church.

Rev. Kernitz,
Downingtown, Pa.

Mattie inspired me in a fight for my own health and in helping a friend with her own battle. He reminded me that facing a fight with courage is, in the long run, more important than winning.

My heart goes out to his mother and friends. He will be missed by many.

This poem was written about watching Mattie on the Oprah Show when he met the cast of Harry Potter. I hope you fiind it a worthy tribute.

Celia,
Cullman, Alabama

Mattie

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Thank you, Mattie. Your legacy will live on in all of us. You will continue to inspire the world with your words and life and how you lived it here on earth.

Personally, you inspired me to reach out to poetry as a form of healing and inspiration when I became injured. When I read your Heartsongs books in the local bookstore it reminded me of the light of hope and faith. You inspired me to want to impart healing with words too. So your legacy lives on not in just one life, but in so many whom you have touched.

People, when they are ill or injured, don't just need physical healing, but spiritual, emotional and mental healing. I think you showed an example of how to receive this healing by writing and sharing poetry with others.

Your mother will continue to see reflections and sparks of you in those who have been touched by your life.

Thank you for your example and your life - it lives on and on!

Sincerely,
Janet

What we should try to be

There are some people in this world that step out and show us what life is really all about. I remember seeing Mattie Stepanek on Good Morning America and completely falling in love with him. Now he's gone, but, not really.

Mattie had what some might consider the worst of life, but instead of burying himself in sadness and hatred like a few people I've known who got sick, he simply lived. And by living a life that was beautiful and pure, and putting it down in poetic verse, he inspired people around the world.

No one should die at 13. But if the importance of our lives is measured in how many people we touch, then Mattie was more important in 13 years than most people I've met in my 25, including myself.

We could all learn a lot from Mattie, and not just about the disease he lived with. We could all stand to remember the measure of our lives, and try to be half as gracious, giving and inspirational as this young man was. And we can remember that as bad as it gets, it's up to us to determine how we deal with it. Life is not a definition - how we work with it is.

Thank you Mattie, for the futures of the people you may have, and could still, convince of that.

Chrystine

Hello. My name is Rosie. I reside in Northern New Jersey. My daily prayers will continue for Mattie's little soul - may he rest in peace with our Lord. His impressive legacy will live for years to come and may your organization continue with research to come up with a cure for MD. That angelic little face, the huskiness in his voice and the manner in which he giggled when he met Jimmy Carter are etched in my memory forever. May his mother find strength as she sends God another little angel.

Our deepest sympathy,
Greg and Rosie

As a 54-year-old, I was unable to turn away from the television each time I saw Mattie on Labor Day. The emotion that he brought out and the passion that he had for life was truly amazing. There is an empty place in this world now, but there is another angel in heaven who can truly reach out and touch many. God bless you Mattie.

Chuck,
Charleston, S.C.

Anyone's God would love him as he loved all people.

Long live his thoughts...

I will miss him. He always made me look within myself for my good qualities that I have.

Best Wishes,
Megan Garnhart, 16,
Stillman Valley

Poet and Peacemaker, Mattie

I never knew Mattie, but I saw him on the Telethon and on Oprah . I never knew what an inspiration he was until my son Logan was diagnosed with a mitochondrial disease. Mattie taught me strength and how play was so important. We can all learn something through the life of this young child who was wise beyond his years. There will not be a day that will not go by that I won't think of him and his beautiful Heartsongs. Mattie, I know your not here in the flesh, but you are in spirit; and through us parents of children who have MD or mitochondrial diseases we will continue to fight for a cure. Mattie, thank you for your strength and for teaching me. To Mattie's mom, may God Bless you and keep you. You are in our prayers and our arms are around you. Lots of love and hugs. Mattie, I know you are running and playing in heaven. We love you and miss you.

God Bless you Mattie

Love,
Jennie

My daughter Brianna is the Goodwill Ambassador for Northern Illinois and suffers from SMA type 1. We wish to extend our deepest condolences to the Stepanek family. Mattie epitomized everything that an ambassador should be. He was loving, gentle and wise well beyond his years. He showed that one person can make a difference. He demanded attention to this horrible group of diseases, not only by his words, but by his actions. He was truly an "old Soul." When I think of Mattie now, I see him standing in a Grecian Theater surrounded by Socrates, Plato, Buddha, Confucius and Mother Teresa. They are debating the topics of Life and Love, and Mattie is winning the debate.

Todd,
Rockford, IL

I am the mother of a daughter with Friedreich's Ataxia. Little Mattie has just always been such an inspiration to me to look at things from a positive view. He was the single most inspiring personality I have ever seen on TV! Jeni must be soooo proud to have been his mother, and hats off to her for raising and inspiring such a wonderful child. May the richness and superiority of his life remembered bring peace to her soul.

God Bless you Jeni!!!

Heaven has received a remarkable angel.

Godspeed, Mattie, thank you for sharing yourself, with a world that is less than you ever were. Please smile down on us.

Mattie has given those of us managing a disease strength, courage and hope. He was an angel.

Sandra

We will all miss Mattie, and wish his family well. I hope we can hear his poems on the Telethon broadcast in September.

Colleen,
Albany, New York

Dear Jeni:

Precious Mattie! It was with such heartfelt sadness that I heard of Mattie's passing. I first saw Mattie on Oprah's show on October 19, 2001, and I now have all 5 of his books. I was so amazed by his awesome faith, and the depth of his thoughts, which he expressed in his poems in such a wonderful way. I have so enjoyed reading Mattie's words, and I prayed for him, and for you for many months. Now, once again, Jeni, you are in my heart, and prayers, as I know that dear, precious Mattie was borne home in the arms of Angels to the waiting arms of his beloved Saviour, Jesus Christ. He can now talk, and laugh with the 3 siblings he spoke of so often, especially Jamie, and await your arrival into Heaven further down the road.

Jeni, I have loved Mattie, and I love you for your wonderful care of him, and, now, I just pray that you have loving friends to help carry you through this most devastating time of your life. May God, in His great mercy, strengthen, and sustain you through the hours, and days ahead.

God Bless you always.

Love,
Gaye (Newfoundland, Canada)

There's the old saying "Only the good die young." Not only was Mattie good, his heart and soul were touched by God as his whole person reflected the Joy and Love of His God. God loves him now in His presence.

I have a picture that I treasure. Several years ago, I was on a bus trip to Nashville with friends. We were touring and attending shows, etc., when we stopped at the famous Opryland Hotel for lunch and shopping. I spotted Mattie and his mom nearby. I had seen him on Oprah several times, and my friend verified that she also was certain it was him. We approached and asked permission from his mom if we could speak to him and take his picture. She was very gracious and allowed us to do so. So I treasure my picture of Mattie, his mom, the dog Oprah gave him and myself. I had him on my prayer list for the last couple years and I feel certain he is in Heaven smiling down on us. Please see that his mom sees this note.

Jean

My heartsong is off-key this week.
Tears flow instead of melody.
I grieve Mattie's loss.
I will work towards harmony
because Mattie taught me
to celebrate after every storm.
His life was a rainbow.
Bringing hope.
Bringing peace.

-"Beanie"

I first met Mattie and his Mom when they came to one of the Annapolis (Md.) HOG Chapter meetings several years ago. Mattie is an Honorary member of our Chapter and I'm proud that we were a part of his life. He was and will always be an inspiration to everyone.

As a Harley Rider and a Firefighter, I'm proud to have known Mattie and will always remember him through his poems.

May GOD Bless his family, especially his Mom.

Tom,
Annapolis HOG,
Red Knights Md. 1,
and Past Chief - Branchville Vol Fire Co.

My thoughts and prayers are with Jeni and Micah. What can I say that hasn't been said.......

I'll listen to my heartsong and I promise to play after EVERY storm.......its the simplest and humblest way to remember and to honor Mattie.

Robert (father of Kevin, SIDS baby),
Suisun, Calif.

I am sending this e-mail with my thoughts and prayers for you all at MDA and Mattie's family. I got a chance to meet Mattie and become a big brother during my time with him. He is a remarkable child and God has blessed him with a great talent and I along with others will miss him tremendously. I was diagnosed with ALS 3 years ago so I know the pain he endured but his spunk was the best.

Just wanted to share this with you. God Bless.

Thanks, Todd