Mattie's Friends Share
Their Thoughts

Since the day I had the pleasure of meeting and visiting with Mattie annually in September at the MDA International Firefighter's Tournament in Maryland, I have carried a sense of optimism which could have only been given, like a gift, from someone as caring and bright as he was. I am deeply saddened by his passing, and my thoughts and prayers go out to his family. I held on to great hope that we'd all be blessed with his presence this year at the tournament again - but it was not meant to be...he has now found peace with God in Heaven. I will miss you, and Maryland will never be the same without you, little one. You keep writing those "Luck for a Buck" fortunes up in Heaven, and pass them on to us when you're watching from above. I love you....and as the song goes - "One more day, one more night, one more sunset - Maybe I'd be satisfied...but then again - I know what it would do...keep me wishing for just one more day with you!!!" May God hold you close to his heart - he has truly gained himself a perfect Angel that will make Heaven a little brighter.

With all my love, thoughts, and prayers ~
Carolyn,
Wife of San Antonio Firefighter David, Local 624

My son Cody, who is 11 years old with DMD, really looked up to Mattie. We have all of Mattie's books. Every time Mattie was on TV we would all make sure to tune in. Our whole family really admired Mattie. He was my son's hero. We even named one of our dogs after Mattie.

I am very proud of everything that Mattie accomplished. He will be missed.

Teresa

My thoughts and prayers go out to everybody who has been so close to Mattie. Although I never was able to meet this amazing little boy, he has drasticaly impacted my life. I, too, have a child who suffers from mitochondrial disease. Mattie's strong will and drive have helped our family cope with this horrible disease. He truly was a gift from God; now he has a need for him back in heaven. Bless the family of little Mattie.

Respectfully,

Carrie

I will always remember first meeting Mattie at a Ride for Life. At this particular event, Mattie designed and wore a costume where his wheelchair was transformed into a Harley. I'm not too sure, but I believe that it was a chopper. Thanks for being so special, Mattie. You will be missed by many.

Rick

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Dear Mrs.Stepanek,

Please know that my mother and I pray for you, and that we know Mattie's love will forever live on through God and through those who feel his love still. I am fourteen and have admired Mattie from the first day I heard of him several years ago. His poems have given my mother and I hope during times of illness or sorrow. You too have made a difference.

Mattie's love lives on in you.

With prayers and peace,
Rosemary Lee

Jeni,

My heart goes out to you. As a Mother, you've lost a very singular & precious "light" in your wonderful prophet-son, Mattie. All the world grieves with you. All of heaven is comforting you, cause they know what it was like when he was here & they missed him in Heaven. God entrusted you with this friend of His, this powerful Angel spirit that breathed over us in 14 years, changing us. Of all possible ladies, you were entrusted with his person. How very special you must be to God, that he entrusted you with His Friend, Mattie. I cry with you and am so proud of you, for your loss & struggle. In Heaven, I'm sure you'll see what a huge soul/light he is there. And, he'll call you "Mom-mom".

All of God's Choicest Blessings to you Now,
Mari-Ann,
Wheeling, Ill.

I wish I could have had the chance to have said bye to Mattie. I remember seeing Mattie on Oprah years ago and thinking how strong a kid he was. I can't explain how I felt the other day when I heard he had passed. Mattie is someone that I will always remember, I will never forget his smile and the courage that he showed.

Its not very often that a 25-year-old has a 13-year-old as his role model.But I am proud to say that Mattie was my role model, my hero, and I am reallygoing to miss him. I don't think a day will pass by that I don't think of little Mattie. I can see it now - Mattie running around in heaven with his two brothers and his sister, playing basketball, laughing and having fun.

I will never forget Mattie, and will live my life by Mattie's motto "Think gently, speak gently, live gently," and Mattie's philosophy: "Remember toplay after every storm."

Love ya forever Mattie!!
Michael,
Frederick, Md.

A Hero in Heaven

God took a Hero to be at his side,
and now it is Our time to abide.
You lived your life to the fullest,
you taught a lesson to all of us.
Remember to play after every storm,
your inspiration was above the norm.
You were our hope, peace and joy,
wisdom of a Wise man but just a boy.
Your mentor was a great President,
his deepest regrets he has sent.
We watched you on Oprah, GMA and King,
on the Telethon you made Jerry sing.
The songs of "Weird Al" may be silly,
your message was serious as sung by Billy.
You will be mourned by the throngs,
many will remember your "Heartsongs".
MD struck down Stevie, Jame and Kate,
now its taken you, the disease we hate.
Firefighters, Harley-Owners and Tall Cedars join to find a cure,
You were an inspiration and peacemaker for sure.
You were a Goodwill Ambassador for MDA,
we will continue our fight for the cure one day.

Larry,
Tall Cedar Foundation Trustee, District 10.

HE WAS TRULY ONE OF THE MOST INSPIRATIONAL PEOPLE I'VE EVER HEARD, REGARDLESS OF HIS AGE. MAY GOD BE WITH HIM AND HIS FAMILY IN THIS TIME OF SORROW.

Pat

Rarely have I been as moved emotionally as I was when I heard that Mattie had passed away. What a beautiful human being! As tears streamed down my 70-year-old face, I thanked God for giving us Mattie if only for 13 years.

"Mattie, look down from Heaven at this topsy-turvy world and ask God to give us the love and peace you talked about." We love you, Mattie!

GJF

Jenn, I am another Mito Mommy, I wrote this about my Mito son, I have watched Mattie over the years show that he had a mommy that also saw and believed in her perfect son! I have shared with my 3 Mito children Mattie's poems during tough times for us. He has been and will continue to be the light for their paths as well. What a beautiful son you raised, Jen! May God give your precious heart peace and comfort and know that Mattie is playing in the arms of Jesus where there is perfect peace!

With much love and prayers,
Karen Ortiz and family
Yucaipa, Calif.

My Perfect Boy

That morning God handed him to me,
A perfect boy I knew he would be.
So strong, so vibrant, so ready to live,
I didn't know what God would ask him to give.
But soon in time, the picture became clear
that perfect boy, would live a life of pain and fear.
What is wrong, what's happening to him?
Doctors not knowing, said to trust them.
My perfect boy was struggling for life,
My heart breaking, full of fear and strife.
Not again dear God, I cried,
As I looked at my perfect boy with pride.
This disease will not steal who he is to
become, I will see to it, I am his MOM!
So I set out to teach him right from wrong,
To hold his head high, and show all, he is strong.
He lives this disease with strength and joy,
Because he is my perfect Boy!

Karen

Copyright C2004 Karen D. Ortiz

The Spirit of God certainly lived in Mattie and was nurtured to maturity by his extraordinary mother. May this Spirit comfort you.

With Deepest Sympathy,
The Lyman Family

I spent today crying. Not crying because Mattie had passed on, but crying because my world is poorer for not having Mattie in it. His message of peace, love and hope; of celebrating life in its fullest, was universal. We in South Africa got to know him through Oprah and Larry King. His message is especially relevant in my country.

My 3-year-old son, also Matthew, has X-linked myotubular myopathy. He has been ventilated since birth and spent his first 17 months in hospital. Mattie gave us the courage to come to terms with our disorder, to live life to the fullest and our motto - to be the best that we can be.

Jeni, I know the loss you are feeling, you have been living with this for so long. All God's love and strength to you.

You both have done so much for MD, for the world.

Mattie - you left footprints in my soul.

Janice and Matthew
South Africa

Mattie's life was like the glory of a shooting star. It only lasted a short time, but oh how brilliantly he lit up the dark skies in all our lives.

You were truly an "Angel in waiting."

All my love to you and your family,
Teri, 24 yr. old with Muscular Dystrophy,
who has adopted Mattie's philsophy to "play after evey storm" as her life's motto

Dear MDA,

One hundred years from now, when my great-grandchildren log on to your Web site, they should be able to still see the pictures and read the memorials of Mattie Stepanek. All of them. I know he will be missed; but, I am convinced the world is still unaware at what we lost when we lost Mattie. I saw him on television during a book signing and was amazed. Imagination and enthusiasm of that calibre is rare even among healthy children. If any contemporary had the potential to be the next Leonardo Da Vinci, Albert Einstein, or C.S. Lewis, it was Mattie. His literary talent surpassed his age. His wisdom, creativity, and ability to compose words were also unusual for his young age. But I guess you mature fast when you have to deal with what he had to deal with.

In my opinion, the best thing you can do is resolve to leave his pictures and memorials easily accessible on your Web site until the Lord's return.

Sincerely,
Wm. Scott

Hi,

My name is Caitlin, I go to MDA summer camp. I have had mitochondrial myopathy since I was born, which was 14 years ago. Mattie was always an inspiration to me, I have all of his books. Thinking of him opened me up to a world of hope and love. Anytime he was on TV I usually tried to watch it. I know now that Mattie is in heaven now doing things he couldn't before, and maybe some day later on in life I will join him and I will get to meet him, which I've always wanted to do. Well I hope everything is OK at his house and let hope go on.

Love,
Caitlin (of Folcroft, Pa.)

Mattie, I will always remember your cherublike face. You taught us all about love, hope and peacemaking. I was one of the fortunate ones who had the opportunity to meet you at the Telethon in Los Angeles. Even though I am an adult, one of "Jerry's kids" just like you, and an educator who is around children all the time, I remember being nervous about meeting you. I was exhilarated to embrace your wisdom, gentle spirit and your fierce determination to make this world a better place. You did just that by being a part of it.

You have left a tremendous legacy. I know that your mom will continue to carry on your messages of peace and the human spirit. We owe her a debt of gratitude for sharing you with us. I think that what impressed me the most about you was that even though you possessed this amazingly brilliant old soul, at heart, you were still a child. I loved watching you race up and down the hotel lobby and backstage at the Telethon. I would overhear you talking to your young friends about video games and movies. Your face was animated whether you were talking to Jerry Lewis, Jimmy Carter, your mom or new friends.

I think that what I will remember most about you (simply put) was your appreciation for the "good little things" in life and your desire to change "the big, bad things in life."

Thank you for all of your gifts. I'm sure that you are laughing with and enlightening your fellow angels. Lucky for them, a boy with a cherublike face, a brilliant mind, and a heart full of peace has just moved in among them.

Play well, Mattie!

Shelley,
MDA National Task Force on Public Awareness

Dear Jeni,

Mattie gave us all something in our hearts, and we will never forget him. We will take him and his messages with us always. I wanted you to know, Jeni, that you have given me a strength that I didnt know I had. I am a single mom of two boys with Duchenne muscular dystrophy. When I saw you and Mattie for the first time I thought, Jeni has been through the loss of three children, a fourth beautiful child who wouldn't be with her long and is in a wheelchair herself. I remember thinking, I think maybe I can do more than I think I can. Maybe I CAN make it after all! Thank you for all you have given me, Jeni! Mattie will never be gone!!!!!!!!

Diane, Jackson, & Hayden
Rochester, N.Y.

Dear Jeni,

I am writing this both from me and on behalf of my husband, who has mitochondrial myopathy and is now so frail and weak that he cannot speak.

I want you to know we were terribly saddened to learn that Mattie is gone from this world. We know that he is in heaven and that surely heaven is rejoicing. His years on this earth were so filled with life and with important contributions to his family and to the world at large. Mattie was a remarkable child and young man, and I know he will be missed by so many. Thank you for nurturing Mattie and guiding him into the person he was.

My husband loved Mattie's poetry and read it often, and when he became so ill he could not read, I read it to him. There have been many times over the past several years when, sitting in emergency rooms, battling this disease, watching a loved one suffer terribly, I was in great despair and overwhelmed. But I would remember Mattie, his poems, and you, Jeni, and I would be comforted and find strength to continue.

Thank you so much for your examples of how to live life fully in the face of a devastating disease. May God bring you comfort and healing. Rest assured that the world will hold Mattie's memory in high and dear regard.

Susan,
Columbus, Ohio

Mattie escorted First Lady Laura Bush on a tour of the Children's Hospital National Medical Center in Washington.

MDA,

I just wanted to let Jeni know that we are praying for her and that Mattie will be greatly missed. My daughter Michele (Mid Tennessee and Southern Kentucky Goodwill Ambassador for MDA 2003) was diagnosed with MD and has several other things wrong with her. She is continuing to get worse and through Mattie I have received the strength to continue. Michele and I have read all of his books and she has gotten strength to continue in school and all that she can do. Mattie was truly an inspiration to all of us. The MDA will be different without Mattie but we will go on. Jeni stay strong and remember that there is an entire WORLD out here lifting you up every day.

Love, Melissa and Michele,
Nashville, Tenn.