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November 21, 2009

The Legacy of Mattie Stepanek

Posted: 01:10 PM ET

NOTE: Jeni Stepanek will be our guest tonight on LKL.  It's an emotional interview you won't want to miss.

By Jeni Stepanek for the Larry King Blog

STEPANEK_00001For many years, people have asked me, “When are you going to write the story of Mattie’s life? I am inspired by his words, his message. I want to know more about Mattie as a person.” And for a number of years, I have had this story planned – outlined into chapters, with detailed notes and thoughts about how such a book might unfold chapter by chapter. It wasn’t until last fall that I felt the time was ‘right’ to tell this story though.

Despite the sad truth that Mattie died just before his 14th birthday, I wanted this book to be a celebration of his life. I wanted to capture his wisdom (yes, he penned seven NY Times bestselling books of poetry and essays), and also his wit (yes, he really DID put apple juice in a urine cup and panic unsuspecting doctors who saw him drinking it). I wanted to write a book that inspired people to think of Mattie with a smile, and to recognize that he was an ordinary kid who made some extraordinary choices in life. I wanted folks to remember why they were drawn to him during his time on earth. I wanted readers to feel how ‘real’ Mattie was, and how very much alive his message of hope and peace is in the world today through a legacy that is growing outward and ‘forthward’ more and more each year. Now, that book, “Messenger: The Legacy of Mattie J.T. Stepanek and Heartsongs” is complete, and ready ripple around the world.

Through television appearances and writings and speeches, Mattie reminded people of all walks of life that ‘hope is real’ and ‘peace is possible’ and ‘life is worthy’ – despite whatever burdens or blessings were a part of any given day. This book will help readers finally learn about Mattie himself, and how he came to believe and live those truths in his own life. Readers will learn about Mattie’s hopes and hesitations, his education and spirituality, and his practical jokes and adventures at summer camp. The importance of ‘morning coffee’ and ‘afternoon tea’ are explored, as well as the significance of ‘sunrise on pier’ and ‘pumpkin season’ and other themes that touched Mattie’s essence. I share details of Mattie’s private life at home, his journeys on the road once he achieved some level of celebrity, and his long months in the intensive care unit during his final years of life. The book is filled with photos from throughout Mattie’s life, most of which I have never shared before. There are also bits of previously unpublished poetry and journal entries by Mattie, as well as excerpts from his e-mail correspondence with Oprah Winfrey, Chris Cuomo, and other friends.

Mattie was my son, and he was also my best friend. There is not a day that passes that I don’t miss him, or the little notes he would leave by my bed, or his snuggles and foot massages, or the word games and board games we played, or the conversations we had about life and our world, or just holding his hand. But this book is not about what I miss, or about my grief, or even about Mattie’s passing. This book is truly about the celebration and lasting inspiration of a young man who taught us all through word and action, to “Remember to play after every storm!”

I am very proud to be “Mattie’s mom.” And though there were some difficult moments during the writing of this book and during the audio recording of this book for CD, I am so happy that I realized last fall that it was time to share this story. I am excited about the release of this book, and I am looking forward to interacting with readers who want to share their thoughts after reading the pages. What a gift it has been to me to have the opportunity to share the story of my son’s life in this book. Please feel free to contact me through Mattie’s website: www.mattieonline.com.

Stepanek Book Cover

"Messenger: The Legacy of Mattie  J.T. Stepanek and Heartsongs" is in bookstores November 3rd.

Filed under: Larry King Live


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Sandra Zerner   November 2nd, 2009 9:08 pm ET

I am excited to hear about the new book. Mattie has been an inspiration not only to me, but to hundreds of students who have heard me share Mattie's story through the program "IT'S GOOD 2B GOOD!" Mattie has been a wonderful example to the students of the power of one child to make a difference.
Thank you for this book – I can't wait to read it!


Karina Soorya   November 2nd, 2009 11:31 pm ET

Mattie sounds brilliant, and I pray that his soul may rest in peace. This book sounds very touching and amazing...
I guess I'm just speechless, here I was searching for some dumb article when I came across this and began reading it...
I'm sure we can all learn a lot from Mattie and we all should try our best to cope with current situations.


Lauren--NY (@TheGrottoTweets)   November 3rd, 2009 12:14 am ET

Congratulations on the release of this book. I was so inspired by Mattie and have such love and affection for him, and for you, and for the MDA. It is an honor and a privilege to be a Twitter pal. :)


Ben mwaura   November 3rd, 2009 4:19 am ET

Trulely inspiration to many of us.


Jeni Stepanek   November 3rd, 2009 9:56 am ET

Thank you to everyone who has embrace the new Messenger book with excitement and enthusiasm! I look forward to hearing from readers. Thank you, Larry, for posting this blog, and sharing the story with your viewers!
Jeni Stepanek ("Mattie's mom").


john nielsen   November 3rd, 2009 12:47 pm ET

Beautiful, it is saddening, inspiring and all around full of love and I haven't read the book yet. Shout Love out to Mom and Mattie, you know he would be jumping for joy right now:)


Norma Bliley   November 5th, 2009 2:54 pm ET

Can't wait to read this new book! I always enjoyed seeing Mattie on Larry King. Mattie was and continues to be a gift to us all!


Suzie Rodrigue   November 11th, 2009 2:42 am ET

This book is wonderful! I love reading all about Mattie's life, especially written by his beautiful mother Jeni. She knew him the best! This book puts all of his poetry, his lifestyle, his grief, his pure heart, his love of peace, and his practical joke ways all together to understand why Mattie was sent by God as a 'Messenger'. Everyone can relate to this wonderful boy is so many different ways. I am very thankful to God for the blessing of Mattie and Jeni! In fact, the first time I ever saw Mattie was on Larry King! Thank you very much!!


ckelly   November 21st, 2009 2:32 pm ET

Mattie loved Oprah and Oprah loved Mattie-he wanted her to continue her show to make 25 years-she honored that request.


Jane Stack   November 21st, 2009 2:46 pm ET

I encourage everyone to purchase Messenger this holiday season. Mattie and Jeni's story is inspiring and uplifting and would make a wonderful gift during this time of Thanksgiving and Peace on Earth. Let's spread the message of peace now.


Patricia Mora   November 21st, 2009 7:10 pm ET

I am so pleased this story [and book] are getting out into the world. Mattie and his mother are a reminder that good things happen and extraordinary people are rigorously redefining a life of meaning and hope. I give up on much of television — it's simply not helpful. However. "Messenger" is as inspiring as they come. I am so happy to have heard of the Stepanek "duo." They come to mind daily when I feel overwhelmed or become dismayed that I somehow have been denied my due. This is important work you're doing. Thank you, Larry King. You are a force for good and a gentleman.


DO   November 22nd, 2009 1:05 am ET

If Oprah loved her guy Mattie as much as she claimed why isn't she using the book Messenger on her book club? What a fabulous way to help " her guy" get his message to millions of people.


JamesB   November 22nd, 2009 1:55 am ET

@DO, good point. But then if you haven't noticed, Oprah leans strongly in certain directions with books and movies she promotes.


dawnmarie   November 22nd, 2009 8:11 pm ET

I am getting all of his books just seeing the interview with is mother and the one with Larry that child was a gift of God


Chris   November 23rd, 2009 11:36 pm ET

Mattie was a most caring and wise soul, well beyond his years on this planet. Bless you Jeni.
What is the true measure of what a great nation and a great civilization should be? We have done many things better than the others and some things not as good. We are not there yet.
When will our species awaken and grow to our full potential in order to fullfill our greater destiny? "When will the needs of the many be cared for before the needs of the priviledged few"?


William Hallinan   November 24th, 2009 10:01 am ET

A Real Prescription for Health Care

So often our legislative leaders decide to attack a problem but as the process unfolds, the solutions prescribed oft bear no relationship to the problem that was to be fixed. Hence we find ourselves in a situation where spiraling health care costs are being remedied with what congresses own oversight office believes will do nothing but increase the cost of health care.

Removing structural impediments to competition and harnessing the potential of the available technology are the keys to taking the current health system to a new level of care, quality and affordability. We need to take a lesson from recent history. It was not long ago that Detroit made crappy cars under the theory that “functional obsolescence” would cause the consumer to buy again sooner. Japanese competitors then showed the consumer an option to functional obsolescence. Quality cars were suddenly produced by American car makers. They properly harnessed the technology for mechanizing production of cars. The increasing cost of labor further promoted this harnessing of technology. Then the competition for warrantees led to the efficient repair and analysis of vehicles with computers. A trip to the modern dealer uses a computer to analyze the problem, prescribe how long it should take to fix the problem and maintains the complete life history of repairs. The medical industry is currently in the same state of mind as when car makers believed functional obsolescence was in their best interest.

Although modern medicine has benefited from technology, it has done a miserable job of capturing the potential of technology to enhance the efficiency of our care. A trip to the doctors office typically involves the filling out of manual forms at each visit, and incoherent efforts to digitally capture a patients medical history from a range of providers. A visit to one doctor can even result in just prescribing pain pills that relieve symptoms, but fail to order a lab test, mri, or x ray that ascertains the true nature of the problem. The patient likely makes a number of visits before the problem is ever identified. Each visit requires sitting in a room full of sick people until the patient is so fed up they go to the emergency room to get treatment (if they don‘t die first). Compounding these underlying problems, is the insurer can benefit from not diagnosing the problem, as the cost to treat may actually be more than the cost of ignoring the problem (at least from a short term perspective). Additionally, the provider often has an opportunity to abandon the patient with yearly enrollment or to increase the rate if the cost to treat is high. Insurers also spend a great deal of their efforts ascertaining the risk profile of a group of potential customers rather than spending efforts figuring out how to serve the patience more cost effectively. Lastly, the cost goes up every year because so much of our population already is served by the government, and the government steadily increases the payment to the medical industry through annual adjustments.

The notion that more government will fix the problem is as ill conceived as supporting that additional government with a 40% tax on premium health plans. The only reason those premium plans exist is they allow employees to shelter money from government taxation. The 40% tax will remove this benefit and cause those premium health plans to disappear faster than the trade in of clunkers for new cars.

In spite of this terminal diagnosis of the current system, there are real solutions that can provide meaningful improvements to the health care system. Some specific remedies that could be applied are as follows:

Require all HMO’s and other providers to charge the same rate irrespective of the risk profile and accept patients irrespective of the risk profile. This would eliminate the pre-existing conditions dilemma and force the providers to focus on problem solving rather than problem avoidance. A rate could be varied based on the size of the employer pool but on no other factors. The current system provides a dis-incentive to delivering efficient and effective health care as it is less costly to not diagnose, re-evaluate the risk at the end of the annual contract, and raise the rate accordingly.
Much of our medical system is driven by a variety of well intended regulations to promote privacy. We should allow the insurer to offer the consumer, a preferred rate program that is conditioned upon providing and maintaining a digital record of a patients medical history. Before you schedule an appointment, a point and click program through the internet would be used to identify symptoms. The digital data base for that program would prompt appropriate queries based on the symptoms. The medical history would be used each time a medical issue arises to identify an array of possible diagnoses to facilitate a doctors analysis of the problem. Where appropriate, tests would be ordered before a patient ever arrives at the doctors office. In some cases the diagnosis would be almost complete before one ever arrived at the doctors office. Two simple examples illustrate the potential of a medical diagnosis developed by software to supplement but not replace the talents of our medical professionals. Patient has a skin irritation. The program makes queries about diet, allergies, changes in lifestyle. A digital thermometer records the patient’s temperature, a web cam adds a picture of the irritation to the patients data base to compare if the condition worsens. The image is compared to a data base and definitively identifies one or more possible conditions. If it appears to be cancerous, the biopsy would be ordered prior to ever sitting foot in a doctor’s office. If it is a minor bacterial infection, a prescription is ordered and sent to the pharmacy of your choice.

Example two would be the swine flu. Patient symptoms such as temperature, length of sickness, hoarseness and other symptoms are reviewed and if a doctor’s visit is warranted it is referred to the minute clinic. If the queries suggest possible other internal issues, the matter is directed to the emergency room or conventional doctor’s visit as needed.

Replace the littany of paperwork and insurance filing forms with a digital record that serve as the data base for a doctor serving a patient and an automated basis for providing payment.
Invest in the software to enhance the effectiveness of our medical doctors is essential. Web MD on steroids is what we need. Doctors are human and the mistakes that are made from not realizing symptoms are caused by prior prescriptions, changes in diet, oversight, failure to request a necessary blood test, or a myriad of other causes can be significantly reduced by harnessing the technology that is all readily achievable but simply not developed.
Invest in the technology to accelerate providing a reliable, quick and cost effective analysis of blood samples and other body fluid samples. The body fluids are an enormous data base of what is happening in our bodies. They provide data on everything from infection, cancer, diabetes to a heart attack. The day when a pin prick blood sample is part of the routine examination with results provided just as an x-ray is done as part of the dental office visit needs to be ushered in. The efforts spent on mis diagnosis need to be replaced with timely and correct diagnosis. Once incentives to the medical provider are structured to encourage solutions, the waste associated with failure to diagnose will be significantly reduced. We have found the technology to quickly analyze the combustion fluids of our automobiles and certainly can create a cost effective means to analyze the fluids of our own bodies.
Ultimately unabated competition will create the same competitive forces that over hauled the auto industry. Minimizing the impediments to entry into the medical provider business is key to fostering this competition. Authorizing insurers to provide insurance to an HMO or HSA so that a group of twenty five doctors has the ability to recruit patients and compete with major medical providers is essential. Authorizing insurers and creating a structure that allows providers to efficiently operate in a range of markets is also essential.
Some treatments provided under medicare need to have competition inserted into the mix. The government needs to stop saying this is what we will pay for a procedure and take certain procedures into a competitive arena. By way of example, the government may project that the Chicago area will have 200 hip replacement surgeries provided by medicare. The government or private provider would solicit bids with preordained qualifications such as years of experience, successful surgeries, patient recovery rates and the work to do those hip replacements would be awarded to the competitive and qualified provider. Not all procedures lend themselves to this process, but the ones that do need to have the competitive forces of the market re-injected into the system.
If a patient seeks another opinion and that opinion provides conclusive evidence that the problem was not properly diagnosed, require the health care provider to pay the reasonable cost of obtaining that assessment.
Require clear and simple disclosure of the benefits provided so the consumer can decide what is being offered and at what price.
The only thing worse than having litigation as part of our medical system is not having litigation. The insurance industry and the trial lawyers need to collaborate and provide a range of alternatives to make medical insurance costs more affordable. Caps on certain types of awards or prescribing awards are one means. Once software is developed to supplement the doctors efforts to diagnose, this digital record of what transpired will become the litmus test for determining if litigation is warranted and include the data base of what the patient told the doctor. By having software established by the finest minds in the medical industry, a doctor that follows these procedures should be insulated from litigation.
Life time caps on the cost of treatment at least need to be considered. The balancing act is in establishing what that number ought to be. Without this, the cost of medical insurance for everyone is adversely affected.
Invest in making portable MRI’s a cost effective tool for each medical office. Real diagnosis is often weighed against the cost of an MRI to see what is really happening. Making this technology portable and affordable enough so it becomes available at the generl practitioners office would provide for more effective and efficient treatment for many. This MRI would then be part of the patients medical record and forwarded to a referral specialist as needed.

Some real prescriptions from an average citizen (and no need for two thousand pages).

William Hallinan


Steven Campbell   November 24th, 2009 1:06 pm ET

My Great grand mother Mary Effie Thope Was cousin to letha Mckinley, Martha Ellen Scott's mother who was second cousin to President Mckinley. The Mckinley presidential library is unable to confirm that Letha is second cousin to Mckinley. So why is it in Martha Scott's bio? If it can be confirmed, my great grand mother may also be second cousin to Mckinley. My great grand mothers father was Charles Munson Betson Thorpe whom we believe married Mary Mckinley. Please, I need the power of CNN to solve this puzzle. I believe Angela Lanbury and Martha Scott were good friends possible she may shine some light on the subject or even Martha Scott children or grand children.


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