Matthew Joseph Thaddeus Stepanek, a talented young poet, died on June 22 of complications from a rare form of muscular dystrophy.
The 13-year-old Maryland native was born with dysautonomic mitochondrial myopathy (DMM), a genetic neuromuscular disease that impaired his small body’s major functions. DMM affects the mitochondria, which creates much of the energy a body needs to live and grow. Most patients experience muscular weakness, difficulty in breathing and digesting food, seizures, heart failure and dementia. His mother, Jeni Stepanek, has the adult-onset form of DMM, and three of his older siblings died of the disease in early childhood.
Mattie’s cognitive skills remained intact for most of his life. He started writing poetry when he was only three years old to cope with the death of his brother. Mattie developed an international reputation for his words of peace and faith when his five poetry collections became best-sellers. This success led to television appearances on “Good Morning America,” “Larry King Live” and “Book TV.”
Thin and bespectacled, Mattie greeted everyone he met with a wide, dimpled smile. He attended public school through the fourth grade, often lugging around an oxygen canister to breathe, then continued his studies at home. When he wasn’t writing verse, collecting rocks from all over the world or training to become a black belt in martial arts, Mattie worked as a peace advocate and as a National Goodwill Ambassador for the Muscular Dystrophy Association.
Mattie made three wishes during his lifetime, all of which came true: publishing a book, meeting Oprah Winfrey and befriending former President Jimmy Carter, who wrote the foreword to Mattie’s second poetry collection, “Journey Through Heartsongs.” In his final years, Mattie received regular blood transfusions and used a power wheelchair and ventilator to stay alive. He is survived by his mother and his service dog, Micah.
• Listen to Mattie Give a Poetry Reading
• Listen to a Tribute From NPR
June 23, 2004 by
Mattie Stepanek
Categories: Writers/Editors
Mattie opened the eyes, hearts, and minds of many people. His words of peace and love will endure for so many more years than his little body would allow him to live.
You are home now, Mattie, but thank you for the beautiful visit.
This boy was truly an angel and a beautiful soul. I pray his mother is comforted by his spirit.
God Bless Mattie’s Mother and let her have peace in her time of loss and Mattie”SOAR WITH THE ANGELS” He was an angel amongst the rest of us and he graced us with his words. It’s so rare that someone so young can touch the world with words. We’ll miss you Mattie!!
Mattie is in a better place with the angels of his kind God Bless you Mattie , you will be missed………. Ms. Stepanek you will be in my thoughts..
I am stunned. I had never heard of Mattie until he had already died. After hearing the newscasts, I looked up the website and ordered some of his books. I must say that it seems there are angels among us indeed. This beautiful child was a rare and beautiful gift to the world. Even in death he will inspire and uplift people in their own lives through his literary works which live on. Rest in peace, Mattie, and know that you are beautiful.
Mattie,
You were truley an Angel Among Us.
You will be greatly missed!
Rest in Peace Mattie and Thank You for your courage and your Love.
May God bless and and comfort his Mother
Kaye S.
Arkansas
Mattie I wish you were still here with us today. I would do anything for you to come back to earth,anything.Every night I always pray to God that he will always take good care of you and give you another life in which you live up to be 100. Somtimes Mattie, I feel as if you are talking to me from your home, heaven.I pray to God that even though you not with me, I can just feel your hand. I also pray to God that you and I will talk and we will become best friends for life. This is my wish,Mattie. I know that God will fulfill my wish and you and I will talk to each other very soon. We will talk very soon Mattie, good-bye, and thank you both,God and Mattie. My best wishes.I love you both,thank you again.
I heard of Mattie’s passing from this life onto life
with God. I am heartbroken. Mattie was a wonderful,
inspirational person. When I first saw him on Oprah
Winfrey. I was in awe of his special talents. I went
out the next day and purchased his first book. Very
inspirational. Very moving.
I am so sorry Mrs Stepanek, for your loss. May God
richly bless you. You will always be in my prayers.
With Best Regards,
Kari
Mattie: You will be missed. Michelle
I am heartbroken..what an inspirational child. I was so enthralled when i saw him on Oprah. His books about “heartsongs” are just beautiful. What a gift he gave us all! He strived for peace in the world and in just his few short years, I think he managed to help a lot of people with his poems. He lost all his siblings to this disease and he just kept on going. He had such wonderful philosophies about life. He was an amazing human being!
He will be missed.
Mattie, you were truly a gift to our world. I have followed your life closely, and have found it to be a true source of hope and inspiration. I have several of your books, and I share them, your philosophy, and your life story with my sixth-grade students. They, too, admired you. I hope that your poetry affected each of them as profoundly as it did me, and that each of them will work to carry on your mission, as I will.
As a mother, my heart goes out to you, Ms. Stepanek. Thank you for the inspiration you gave Mattie, and thank you for sharing his life with each of us. You are truly a noble woman, and you will always be in my prayers. May you have the strength you need to carry on in your battle against this tragic disease.
MATTIE TOUCHED MY HEART AND WILL ALWAYS BE THERE. THANK YOU LITTLE PEACE MAKER FOR THE MESSAGE YOU GAVE TO THIS WORLD. YOU ARE WITH YOUR SIBLINGS NOW AND SO MUCH BETTER OFF THAN ALL OF US. YOUR MOTHER IS IN OUR PRAYERS. LOVE TO YOU. YOU WILL BE MISSED.
Jeni:
My heart is broken, I’ve been in tears ever
since I learned of his passing. I miss him so
God please let him be playing after this storm.
I’m so so very sorry,
The world is so much poorer without him.
I keep Mattie’s picture on my entertainment center so I can see his precious smile anytime I want to. I have all of his books and audios so I can hear his voice and words whenever I want to. Mattie had quite a “storm” and I pray his playing, playing, playing and enjoying the rich rewards for his labors for us here on earth. We shall meet again, my precious Mattie.
mattie i wish that you were still here with us because everybody is missing u
Mattie, I never heard of you until my mom told me about you. By then, you had already died. My mother told me of your gentle voice and your wisdom beyond your years. You have come into my heart and I know there you will stay. You have such strong faith, far stronger than my own. I know that you want life to be a celebration but forgive me, I”m still sad over you loss. Right now, I’m trying to hold back my tears but they still come. I know that you are ok, absolutely ok but my heart still aches for your loss. I know you are with the angels and with God. Mattie, make your Heartsongs flood the earth from heaven. I will be listening. I love you, Margaret
Thank youb mattie for everything you have done
Jeni and Micah –
You were the earthly angels that lit the heart of Mattie so that he could go on. . . He was the angel that lit the world so that IT could go on. . . You were given this wonderful boy and we were given all of you – that your light might shine among men (men and women, of course) –
Jeni, pray and GOD will heal you and Micah and bring you forward until that day when you both will join Mattie and your sweet children again. . . with laughter and woofs and hugs galore.
And Take special care of Micah whose eyes are incredibly knowing – – – hauntingly knowing – as if he knew what was to be. . Dogs grieve as much as people – I know this firsthand. . .
and, Micah and you need each other – – – but I know you know that.
GOD BLESS YOU – and MICAH – and may GOD CARE FOR YOU BOTH UNTIL YOU BOTH RISE TO HEAVEN TO GREET MATTIE – both of you had to be part angel, too.
. . yes, you, jeni, and even Mattie’s and your dog – Micah. . . so often those in our midst are “meant to be” and special, yes, even our dogs and our Moms.
I will pray for you and Micah. Hug each other tight, and hear Mattie laugh happily from heaven – the good things in life are still the good things in life – love and laughter – and enjoying being. . . It’s hard to go on without Mattie – such a comfort to you, I’m sure – – but how much he suffered – and you – – – and Jeni, if this was Mattie’s fate, his lot that he have to suffer as he did, then rejoice that he rose above so much – and was able to yet bring such joy to people, open their eyes to GOD’s Will… Just think now of how much joy he has brought to all of Heaven by bounding through the heavenly gates!!!
(I learned of Mattie’s passing late – felt so shocked and bad to hear it – as if we lost an angel on earth that could have helped us understand so much more – – – – but time moves us through GOD’s WILL – and it must be that way – as GOD plans out only the best for us – and we must be faithful to HIS PLAN – – as you are . . . and as Mattie has shown us we must be.
LOVE
MARTHA MELYAN BRUNELLE
mattie u were a beautiful poet and had a good heart.u were and angle and had much to teach the world with ur poetry u didnt let any thing keep u down and u poetry had such meaning to it and i learned soo much from it thank you.u will be missed and u will be loved 4 ever in our hearts and spirits. i love u mattie!
love
Kaylee Graham
age 13, from madison ohio
God, watch over the little angel who is finally at rest.
Mattie, your life was one of enourmous storms, each of which you faced with hope, faith and love.
I pray that you are now playing in heaven with the joy so absent from your life here on earth.
May you remain forever an inspiration to the world, and a lesson in peace and tolerance.
Rest in peace little angel
Mattie had such a wonderful way of writing and I felt so inspired by this young boy who had spent such a short time on Earth. He truly influenced this world in which no other child could have done so in such a short lifetime. Mattie’s “heartsongs” I consider to be such a treasure, I have seen him on television and find him to be such a wonderful ambassador for DMM. I had only learned of his death in 2004 when I watched the Oprah Winfrey Show, and was very sad that this little boy will no longer be with us. However, his literary works, and the thousands of people that he touched will always remember his goals in life, one of which is to play after every storm. Although Mattie had only spent nearly 14years on Earth, I hope that he is at peace in Heaven, that he is happy and I wish his family all the best. I’ll always have the Stepanek family and especially Mattie in my thoughts and prayers. Rest in peace, Mattie.
Mattie,
I cannot believe what a beautiful human being you are! You touched my life and many others….You also touched my heart and my soul. I had many dreams about you helping others and my grandmother had a dream about you that helped her through a very rough time. I begin to cry every time I think about you, with both tears of happiness and sadness. I am so sorry for your loss, but I know that you are happier than you ever were before–You are now with God. I will never forget you and what you have done for me and many others. You deserve so much and now, it all has been given to you….I love you so much and thank you for giving me a new perspective for my life.
I will always remember your greatness,
Briana, age 13
I am from Brazil and I have a huge kindness for Mattie since the first time a saw you on Larry King Live………..I pray for him e for his mom since then, every single day………..God bless you Mattie , wherever you are (and I am sure its in haven) and your lovely mother…IF LOVE IS ALL AROUND I’m sure you are too…………
When I first heard about his death I about cried, but at the same time I started smiling because I knew he had a great life. He is up in heaven with God and that is the best place he could be because he doesn’t have that diease anymore. He is able to run around and play like a normal child. When I read his Poem called,”Prayer for a Journey” it really made me think about everything that God has given me and all of the blessings I have. He has given everyone there on miracles and some people don’t even relize it yet, but when they do they will know how much God really cares about all of his children. I just wanted to thank you so much for writing these poems for teenagers to read. You are a inspirational writer and will be remembered by many.I hope you had a great journey through life.
you are an excellent boy your mother is very proud thank you for helping the world.
Dear resting angel.
I want to thank you. Due to your words of hope. I have been able to look at my world in a new light. I
I never knew Mattie, but I do know that we shared the same birthday and love for poetry. I’ve always dreamed of meeting him, but I didn’t find out until today that this dream can only come true once I’ve reached heaven. Oh how I long for that day. He has touched my life. I found out about him by researching poets. He was one of the first that showed up on google. Even when he had to face death, he still looked at life with loving eyes, and he looked to death as a new start. If we all had his eyes, I believe this world would be much different. I pray that his words will always touch the lives of others as they have touched mine.
I learned to write poetry through Mattie Stepanek! As the famous saying goes, “Although dead, yet he still liveth!”
I so SO desperately miss Mattie. We never met, but I have all of his books, his audio-books, and emails between Jeni Stepanek (Mattie’s Mom) and myself. Oh God, I miss him!!
I wrote an elegy in memory of Mattie and it follows, and my tears do flow when I think of Mattie …
ELEGY FOR MATTIE STEPANEK
MATTIE
Thank You so very very very much for sharing Mattie with us. He was an AWESOME Man.
I just wanted to say that I wish I had known Mattie he was a inspruation for all and will be missed by so meny.God has his angle back with him now. I wish the best for Jeni,I read where she’s not doing well,I hope that she can spend maeny days with her so at his park. So take care Jeni not only do peaple think of Mattie they think of you also,Live in pease. Thank you for such a wonderful boy. Wayne
I have posted on several other sites ,But this young man even after Three years still touchs my soul,I have a grandson whom looks a lot like Mattie,I wished he had more of Mattie’s way’s.I like so many others did’nt know of Mattie until his passing.I would have loved to have met him.Peace my freind and a butilfull enturnaty.