Eulogy for Mattie Stepanek

Speech excerpt

By: Jimmy Carter

Date: 2004

Source: The Carter Center. "Eulogy for Mattie Stepanek." 〈http://www.cartercenter.org/printdoc.asp?docID=1791&submenu=news〉 (accessed December 20, 2005).

About the Author: Jimmy Carter, born James Earl Carter, Jr., was the thirty-ninth president of the United States. He was born in Plains, Georgia, on October 1, 1924, into a peanut-farming family. He has been married to Rosalynn Smith Carter since 1946; they have three sons and a daughter. Among his main areas of focus during his presidency were global human rights and efforts at creating a lasting peace in the Middle East. Since leaving the presidency, Jimmy Carter has remained actively involved in a number of worldwide educational, human rights, and peace-keeping efforts. He is a recipient of the Nobel Peace Prize.

INTRODUCTION

Mattie Stepanek was born on July 17, 1990, and died just under fourteen years later, on June 22, 2004. He was a prolific writer and poet, public speaker, and activist for peace. He was born with a form of muscular dystrophy known as dysautonomic mitochondrial myopathy. His sister and two brothers, all of whom died before him, had the same disease, as does his mother, who has the adult form of the disorder. Mattie published five books of poetry during his brief life. Because he was able to achieve a great deal of public recognition and visibility as a result of his best-selling books and the attendant public appearances, he was made a spokesperson for the Muscular Dystrophy Association and elected as a Goodwill Ambassador in 2002 (a title he retained until his death in 2004).

Muscular dystrophy is the umbrella term given to a diverse array of inherited neuromuscular diseases that affect more than one million people in the United States alone. Some commonalities among the varied diseases are the gradual wasting and loss of muscle tissue, coupled with increasing muscular weakness and eventual loss of motor function. There is, as yet, no cure for any of the forms of muscular dystrophy, although there is much active and ongoing medical and scientific research. The goals for treatment include providing stabilization and increasing mobility and independence, reducing curvatures and deformities caused by weakening and wasting of muscle tissue (over time, muscle dissolves and is replaced by fatty tissue), and maximizing functional quality of existence across the life span. As technology and available life-enhancing treatments have developed, the life span for persons with muscular dystrophy that first develops in infancy or early childhood has gradually increased, extending through the late teens and sometimes into young adulthood.

For a disease to be inherited, one or both parents must carry the defective gene. When a disorder requires only one copy of the defective gene to develop, it has a dominant mode of inheritance. If this gene is carried on one of the twenty-two non-sex human chromosomes, it is called an autosomal dominant gene. When a disorder requires two copies of the same defective gene in order to be expressed in the next generation, it has a recessive mode of inheritance. In that case, a child must receive one copy of the gene from each parent in order to develop the disease. A parent who carries a single copy of the defective gene does not have the disease, but may pass the disease to his/her children.

PRIMARY SOURCE

When I was running for governor a number of years ago, my wife and I didn't have much money so we traveled around the state and we estimated later that we shook hands personally with 600,000 people.

Later I ran for president, as some of you may remember, and campaigned in all 50 states. Subsequently, I traveled around the world. In fact, since I left the White House, my wife and I have been to more than 120 nations. And we have known kings and queens, and we've known presidents and prime ministers, but the most extraordinary person whom I have ever known in my life is Mattie Stepanek.

I didn't know Mattie until about three years ago when Make-A-Wish Foundation sent me a letter and said there was a little boy who only had a few more days to live and his final request was to meet Jimmy Carter. I was surprised and honored and within a few days, as a matter of fact, the Good Morning America program arranged for Mattie to be interviewed and for me to come there as a surprise to meet with him. He later told his mother, Jeni, that when I walked in the room he thought it was a presidential impersonator. And later, when it proved to be me, he told Jeni, and Jeni told me, that that was the first time in his life, and maybe the only time, when Mattie was speechless. But we exchanged greetings and formed, I would say, an instantaneous bond of love….

That meeting and our subsequent relationship have literally changed my life for the better. Mattie said that day that I had been his hero for a long time and I was sure that he was just joking and he could tell on the ABC program that I didn't really quite believe him. And so to prove that, he sent me a video, a 20-minute-long video that he had made when he was 6-years-old, explaining the life of Jimmy Carter. And for the different segments in the video, he dressed appropriately.

So, it started out I was a little farm boy and Mattie had on ragged clothes and he spoke with what Rose (Rosalynn) and I thought was an atrocious Southern accent. And then later I was a naval officer and then later I came back to be a farmer and then ultimately was president, so he changed clothes every time. And then while I was president, he gave an appeal to human rights and peace and things of that kind and while the camera was on him, he realized later, his toes kept wiggling, he was barefoot, so for a long time he apologized to me that he should have done that segment over and at least put on shoes to be president.

He sent me another video, which I would like for all of you to try to see. It's a video of his competition as a black belt in martial arts for the ultimate prize in that intense and demanding sport. It was incredible to see the agility of that young boy and the strength in his body.

Mattie and I began to correspond. After his death, Jeni gave me the honor of letting me come and do this speech. I had my secretary get out our correspondence. It's that thick, on every possible subject. He was always in some degree of anguish, and I think embarrassment, when his books on the New York Times list were always above mine. And he would sympathize with me and say, "Well, you know maybe poetry just has less competition than what you are writing about." But he was very sensitive to my feelings.

We also were close enough for Mattie to share some of his problems with me in his private messages. He talked about when he and Jeni were not well off and some local churches, I'm sure not the one represented here this morning, would take up a food collection and send it to them. Mattie used to examine the labels on the food and quite often he said he would find that the date had expired and that people were giving poor people inferior food that they didn't want to use themselves. And Mattie said, "If my books make a lot of money, we're going to get food that's brand new and make sure that poor people get the best food, even if we have to eat the old, outdated food in our house."

He was very proud of the fact that he and his mother could move into a place that had windows.

I've thought a lot about Mattie's religious faith. It's all-encompassing, to include all human beings who believe in peace and justice and humility and service and compassion and love. The exact characteristics of our Savior Jesus Christ. He was still a boy, although he had the mind and the consciousness and the awareness of global affairs of a mature, philosophical adult.

One of his prime goals in life was to see the movie "Return of the King" seven times and I hope he was able to accomplish his goal. I'm not quite sure. But that was the kind of thing that he had as his ambitions.

He was as proud as I was when I won the Nobel Peace Prize, which has already been mentioned. As soon as the ceremony was over at the hall in Oslo, I went by myself to the top of a little hill right behind the place and I found a rock and I inscribed on it and I sent it to Mattie, because I felt that he shared the honor that I had received.

The last few days, I have been re-reading some of Mattie's statements that he wrote to me, I've re-read the correspondence. One thing he said was, "I choose to live until death, not spend the time dying until death occurs."

Jeni told me about one occasion when Mattie was supposed to be a main part of the program which he helped prepare to raise funds for muscular dystrophy, but when the time approached he was in the intensive care unit. They announced at first that Mattie could not attend the event that meant so much to him, in which he had helped in its preparation. He insisted on coming. When he got there and began to say his lines, he announced, "I'm out of breath. I can't speak." Mattie loved to dress up and to wear fancy clothes and his favorite kind of clothes, as some of you may surmise, was a tuxedo. So Jeni and Mattie arranged for him to put on a tuxedo and he said, "When I have a tuxedo on, I can talk." So he went back with his tuxedo.

Mattie said he wanted to be, as an ultimate goal in his life, an ambassador of humanity and a daddy. Mattie had already named his first seven children and had even given personal idiosyncrasies and characteristics to the first four. He wanted to leave a human legacy and family descendents, but Mattie's legacy, obviously, is much greater than that.

As has already been quoted, he said, "I want to be a poet, a peacemaker and a philosopher who played." Mattie was deeply aware of international affairs and shared a lot of his thoughts with me. He was once again in the intensive care unit when the war in Iraq began and Mattie burst into uncontrollable sobs of grief and anger. Jeni said he had never cried nearly so much about his own health or his own problems….

I spent seven years earlier in my life writing a book of poems about which Mattie was graciously complimentary. Poetry seemed to flow out of Mattie, kind of like an automatic stream, directed by inspiration through Mattie's hands for the enjoyment of hundreds of thousands, maybe millions of people. I want to read just a few of them with which many of you are familiar, because he combined humor with serious thoughts. All of them I would say are unique, surprising when you read them.

One of them is titled "About Angels" and he honored me by letting me write the foreword to this book, called Journey Through Heartsongs.

    About Angels  
    Do you know what angels wear?
    They wear
    Angel-halos and Angel-wings, and
    Angel-dresses and Angel-shirts under them, and
    Angel-underwear and Angel-shoes and Angel-socks, and
    On their heads
    They wear
    Angel-hair—
    Except if they don't have any hair.
    Some children and grownups
    Don't have any hair because they
    Have to take medicine that makes it fall out.
    And sometimes,
    The medicine makes them all better.
    And sometimes,
    The medicine doesn't make them all better,
    And they die.
    And they don't have any Angel-hair.
    So do you know what God does then?
    He gives them an
    Angel-wig.
    And that's what Angels wear.

And another one that he wrote:

I Could … if They Would  
    If they would find a cure when I'm a kid …
    I could ride a bike and sail on rollerblades, and
    I could go on really long nature hikes.
    If they would find a cure when I'm a teenager …
    I could earn my license and drive a car, and
    I could dance every dance at my senior prom.
    If they would find a cure when I'm a young adult …
    I could travel around the world and teach peace, and
    I could marry and have children of my own.
    If they would find a cure when I'm grown old …
    I could visit exotic places and appreciate culture, and
    I could proudly share pictures of my grandchildren.
    If they would find a cure when I'm alive …
    I could live each day without pain and machines, and
    I could celebrate the biggest thank you of life ever.
    If they would find a cure when I'm buried into Heaven …
    I could still celebrate with my brothers and sister there, and
    I could still be happy knowing that I was part of the effort.

And the last poem I will read is titled:

When I Die (Part II)  
    When I die, I want to be
    A child in Heaven.
    I want to be
    A ten-year-old cherub.
    I want to be
    A hero in Heaven,
    And a peacemaker,
    Just like my goal on earth.
    I will ask God if I can
    Help the people in purgatory.
    I will help them think,
    About their life,
    About their spirits,
    About their future.
    I will help them
    Hear their own Heartsongs again,
    So they can finally
    See the face of God,
    So soon.
    When I die,
    I want to be,
    Just like I want to be
    Here on earth.

Well, it's hard to know anyone who has suffered more than Mattie. Sandy sent us almost daily reports about his bleeding, internally and from his fingers. I doubt that anyone in this great auditorium has ever suffered so much except his mother, Jeni, and our Savior Jesus Christ, who is also here with us today. I always saw the dichotomy between Mattie as a child and with the characteristics and intelligence and awareness of an adult. Just as we see the dichotomy of Jesus Christ who was fully a human being at the same time as truly God.

I would say that my final assessment is that Mattie was an angel. Someone said that to him once and he said, "No, no." He was very modest. But really in the New Testament language, angel and messenger are the same and there's no doubt that Mattie was an angel of God, a messenger of God.

He was concerned about his legacy, wanting to have seven children and talking about his grandchildren, but Mattie's legacy is forever because his Heartsongs will resonate in the hearts of people forever. I thank God that he is no longer suffering and that he's with the Prince of Peace, getting big hugs in Heaven and maybe wearing a tuxedo.

SIGNIFICANCE

As the study of the makeup of DNA and the genetics of disease becomes more sophisticated, it will become possible to identify the genetic abnormalities that are associated with each of the various forms of muscular dystrophy. Each form of the disease is caused by a specific genetic defect, or improperly constructed protein. That protein has been identified in Duchenne and Becker Muscular Dystrophies, and it is called dystrophin. In Myotonic Dystrophy, the genetic defect is on chromosome number 19, and the enzyme coded on that gene is called myotonin protein kinase. A flawed gene located on chromosome number 14 has been linked to Oculopharyngeal Muscular Dystrophy. Limb-Girdle Muscular Dystrophy is thought to be a constellation of several subtypes of the disorder, as it can be caused by imperfectly constructed genes located on chromosomes 2, 13, 15 (the enzyme calpain 3) and 17 (muscle protein adhalin) in its autosomal recessive form, and in its autosomal dominant form on chromosome number 5.

Although there are a great many forms of muscular dystrophy, nine of them are more prevalent than the others, according to the Muscular Dystrophy Association. They are: Duchenne Muscular Dystrophy (DMD), Myotonic Dystrophy (also called DM or Steinert's Disease), Becker Muscular Dystrophy (BMD), Emery-Dreifuss Muscular Dystrophy (EDMD), Facioscapulohumeral Muscular Dystrophy (also called either FSH or Landouzy-Dejerine Disease), Congenital Muscular Dystrophy (CMD), Oculopharyngeal Muscular Dystrophy (OPMD), Limb-Girdle Muscular Dystrophy (LGMD), and Distal Muscular Dystrophy (DMD).

The most promising avenue for developing treatments for muscular dystrophy involves targeted gene therapy, where a beneficial gene is substituted for the gene that is responsible for the disease. Developing a useful gene therapy is challenging, as scientists search for a way to deliver the beneficial gene into enough cells of the body to effectively treat the disease. In 2005, scientists used a virus called the adeno-associated virus 8 (AAV8) to effectively deliver a gene to all the skeletal muscles of the body of rodents. If this gene-delivery technique is shown to work the same way in humans, this virus-based gene therapy may be the first effective gene therapy for muscular dystrophy.

In the meantime, the most common treatments for the muscular dystrophies involve orthopedic and other assistive devices, braces, supports, and other mobility aids. Physical and occupational therapy are common, and speech and language therapy are employed as necessary. For those forms of MD associated with seizures or muscle stiffening, antiseizure medications are typically prescribed. Corticosteroids are often employed as a means of slowing the progression of the disease, preserving muscle strength, and increasing comfort.

The entertainer Jerry Lewis's name has been associated with charitable and fund-raising work for the Muscular Dystrophy Association since 1955. During that year, the very first MDA Telethon was hosted by Lewis at Radio City Music Hall during the month of June. Beginning in 1966, the annual MDA Telethon was held over Labor Day weekend, and was televised. It was the first time that fund-raising had been accomplished on such a large-scale during a single event. The 2004 Telethon was dedicated to the memory of Mattie Stepanek, and raised $54.9 million for the research and treatment of muscular dystrophy and related diseases.

FURTHER RESOURCES

Web sites

MayoClinic.com. "Diseases and Conditions: Muscular Dystrophy." 〈http://www.mayoclinic.com/health/muscular-dystrophy/DS00200〉 (accessed December 20, 2005).

Medline Plus. "Muscular Dystrophy." 〈http://www.nlm.nih.gov/medlineplus/musculardystrophy.html〉 (accessed December 20, 2005).

Muscular Dystrophy Association. 〈http://www.mdausa.org/〉 (accessed December 20, 2005).

Schneider Children's Hospital. "What is Muscular Dystrophy?" 〈http://www.schneiderchildrenshospital.org/peds_html_fixed/peds/orthopaedics/musdys.htm〉 (accessed December 20, 2005).