The Jackson Sun from Jackson, Tennessee • 6

Sunday, April 25, 20C4 polio: so years UTE The Jackson Sun7 A RES SPECIAL Dianne Dianne Odell's view Continued from cover The 'normal life' of an extraordinary woman if PBS will present 'A Fight to the Finish: Stories of at 9 p.m. Tuesday on WUT-TV, Channel 11, and at 9 p.m. Thursday on WKNO-TV, Channel 10. The one-hour documentary gives personal accounts from polio survivors and their families, as well as from doctors and scientists. The program uses archival photos and film footage, including interviews with Dr.

Sabin and Dr. Salk. by several weeks ago to sing to her and kiss her cheek. "He walked in singing, Did you ever know that you're my hero?" said Libby Murphy, family friend "Dianne's eyes got so big. And then he kissed her on the cheek." For her birthday, Joshua Holmes of Jackson, Cosmopolitan magazine's Mr.

Louisiana, dropped by and brought her a rose. Former Dallas Cowboy Cliff Harris came by on his way to take his son to college. Actor David Keith, a Knoxville native, calls her regularly just to talk. Dianne keeps a picture of him, his wife and their baby near her iron lung. Local people have created a "Dining with Dianne" Club to take meals to the house for her and her parents, bringing the world to her door.

therapy, the qualifying be ause I was sick." It is unbelievable that that is the! She had been breathing case, but it is," said Vickie Walling, sot ie on her own. The respi-chief of staff for VS. Rep. John rat ir went off and after that Tanner, D-Union City. "Congressmanftshf never could stay out for Tanner has tried to get a bill passed vei ftong," Geneva said, that would qualify her for 1 had pneumonia, con-health care.

cost to that gtive heart failure and a Medicare program would be miiu-'voiapsed lung," Dianne said, mal in light of other expenditures. todio commentator Paul But the bill has not passed." Mi Ha vey described them com- A month ago, Frank McMeeiy ing out to save Dianne in president of West Tennessee one of his famous "And Healthcare Foundation, said her Nov, the Rest of the Story" funds were so low "that we estimates; io pieces, we only have three months left" The; )n another occasion, last fund-raiser, held in 2001, raised, when the power went out more than $125,000. Former vice in an ice storm in 1974, president Al Gore attended, along.n Fneman. a former South with nationally known actors, singers I.Ceitral employee, and musicians. j.j staged up for two days Ralph Johnson, local veterinarian; Sought keeping two small and long-time family friend, led aj gai powered generators fund-raising drive through the.wo-king.- Then during Campbell Street Church of Christ om "ant ther storm, Dianne said, April 4 that challenged other churchy.

National Guard turned es to match a donation of up jut here with a generator from actress Jane Seymour and hero am we didn't have to worry husband James Reach. abciit anything." "Donations are still coming inV'U i 1995, the Tennessee 4 change her. When she's bored or in pain, she sleeps. For the past 54 years Dianne Odell has lived in an iron lung, with every breath dependent on a machine. There are believed to be 40 others in iron lungs in the United States; only one woman, from North Carolina, has been in an iron lung longer than Dianne, by one year.

Yet the tiny numbers that make her case unique betray the scope of the problem when she was a child. More than 3,000 children in Tennessee alone caught polio between 1950, when she caught it and 1954. One hundred twenty-eight died. Polio is a virus that attacks the nerve cells and, sometimes, the central nervous system, causing muscle wasting and paralysis. There is no cure, but Dr.

Jonas Salk developed the first vaccine, the injectable, inactivated polio virus vaccine, better known as IPV. The nationwide testing of the vaccine began on April 26, 1954 50 years ago this Monday with schoolchildren lining up at Franklin Sherman Elementary School in McLean, Va. In 1962, Albert Sabin's oral polio vaccine, subsequently given in a sugar cube to thousands of children lined up in provided the first iron lung to polio victims in 1941. The March of Dimes helped the Odell family by providing their first iron lung and, later, a portable iron lung. IT STARTED AS A COLO.

So many polio cases did in 1950. Her parents thought she had a cold and her legs hurt and it didn't take much of a leap for the doctors to diagnose polio. Dianne was 3 years old when she was placed in the iron lung at John Gaston Hospital in Memphis. She turned to her mother and told her "I don't want to live in an iron lung She fought a fever of 105 degrees and would wait in fear for the door to her room to open. The nurses would come in with packs for their patients' arms and legs that were so hot that they couldn't be touched by uncovered hands.

The nurses would use tongs to lift them onto her. She would scream and cry when they came into her room for what was called "the kiddy treatment" and it was all the nurses knew in 1950 that might help the muscles. Polio destroys the nerve that sends messages for the muscles to operate, but it doesn't kill the feeling. Dianne Dianne was 4 years old when she asked her daddy if she'd ever walk again. "He said, "No." she said.

"I had bulbar polio, the worst kind. It attacks your respiratory system." Since those days in 1950 in John Gaston Hospital, Dianne Odell has spent at least a portion of her life in an iron lung. She has had gall bladder surgery, her appendix removed and other health problems. She had surgery for an ovarian cyst, and her knee dislocated when it was moved into place for her surgery. "They couldn't put it back," she said.

They didn't know how it was supposed to fit because everything is so displaced." She has a kidney stone in the wall of her kidney that can't be dislodged. She's been having stones zapped for years. This one will be with her always. Her body has atrophied to 5 feet in length, amorphous. Her hands hang limply the bones dislocated.

"She took Demerol for 22 years. In the beginning, I was the only one who gave her shots," Geneva said. "Every three hours I'd have to give her a shot Then I had breast cancer three times and Daddy had to learn to give lip 1 POLIO TIMELINE On this day, the woman whose life has been framed by a disease scans the world for trouble spots and lands on Nigeria, where the World Health Organization is trying to contain a polio outbreak with the Oral Polio Vaccine. Muslim fanatics apparently have refused to let children take the vaccine for political reasons. As a result, polio has spread from Nigeria to formerly polio-free areas of west and central Africa.

"It's unbelievable. It's horrible," Dianne said. She was only 3 years old when she contracted the virus, but she remembers the hospitals and the hundreds of iron lungs lined up and the pain of the treatments that were little more than hunches. "If they only knew what I know." DIANNE ODELL WANTS TO CHANGE THE FURNITURE. In front of the window in her room is a loveseat sofa in a beige, brown and cream floral pattern.

The The Jackson Sun Former Vice President Al Gore gives Dianne Odell a kiss at her last fund-raising event, held in 2001, which raised more than $125,000. By DIANNE ODELL Special to The Jackson Sun I came home from John Gaston Hospital to a completely new lifestyle, including a new baby sister, Donna. After a few weeks of jealousy, I learned to love my little sister. Then I was very sick for a while with every virus that came along. I seemed to catch everything.

I had a wonderful teacher named Mrs. Mainord who taught me so much. She taught me to speak French and my reading skills were at fourth-grade level when I was in the first grade. She told me once that I was reading so fast she could not find enough books in the library for me to read. My mother was determined that I would live a normal life, so she invited every child in the neighborhood over.

As I grew older, there were more and more friends with more and more parties. Our family had grown to three since Mary Beth was born on May 20, 1957. I graduated with honors from Jackson High School and I had a teacher, Mrs. Helms, who suggested that I enter a contest for a scholarship titled "Why I Want to go to College." I won first prize, a $5,000 scholarship. So I took a year of correspondence courses at the University of Tennessee; then I went to Freed-Hardeman College.

I lived with the Buckleys, who had a million students coming in and out. It was an antique shop and Dale cleaned out one room and we put our beds and shelves in it. My cousin, Doris Johns, lived with me. Then I had to drop out because of migraines. They were intolerable and there was nothing they could find to help me.

My hair was long, down to the floor, so I cut it to shoulder length and laid on my back on pillows all the time. The headaches started to get better and I took injections every 3 to 4 hours. I decided to write a children's book and it took me 10 years to finish it. It is called "Blinky Less Light." On my first computer, to long time. Writing the book was also interrupted by numerous surgeries and visits to the hospital.

When I got my new computer with Dragon Dictate, it only took me 3 months to finish the book. When I was 40, we had an open house and everyone came from Dr. Walton Harrison to Cousin Tuny and everybody else. Then at age 50, a miracle happened and I met Libby Murphy and Alex Harvey. Libby brought me into a whole new world.

Alex wrote "Delta Dawn" and "Ring, Ring, Ring." For a year, Alex made weekly visits to my home and we would sing. He brought me into the world of country music. Then my mother had an accident and was unable to care for me. My father couldn't handle taking care of us both and we needed help desperately. Libby and hundreds of people put together a gala.

There were so many stars there. David Keith, the movie star, introduced his latest movie. Stella Parton it was a wonderful, beautiful occasion. The snow flakes and white stars glittered everywhere. The Wilbourn sisters made me a beautiful dress of sequins with lilacs and blues.

It was a wonderful night that I will never forget. They raised more than $100,000 to pay for my care. That's why I have all these helpers and I don't know what I would do without them. Last year I met Jane Seymour, better known as Doctor Quinn, Medicine Woman. She was so sweet to me and she made it possible for me to talk to Christopher Reeve, her best friend.

1 I thank God every day for Dr. Jonas Salk who created the polio vaccine. If it were not for him, I fear I might have lost more loved ones to polio. Thank you, March of Dimes, for all that you did to help with his research and to save children all over the world. Even though we have come so far in 54 years, we still have a long way to go with polio in Nigeria and other countries, such as Russia and China.

You might ask why this is so important to me. It's because I am Dianne Odell, 1 -s- tj; I 11 the injections. People today don't know what polio is. Here's what it is, Dianne said. ToHo is a living hell." WHEN SHE WAS A CHILD, Dianne could hold a pencil between her toes and draw.

Her mother kept some of the drawings. "I wrote with my foot until I was 10." Dianne said. "I used to be able to be out of the iron lung for three hours until I was 20." Now she is completely confined, with 24-hour home health care. She can speak and swallow, but cannot move her arms and legs or torso. Post-polio syndrome hit in her 30s and her joints are dislocated.

Her spine is S-shaped and her organs are displaced. As Dianne has outlived most polio survivors in an iron lung, problems with her health care and daily life maintenance have tiny fish aquarium, family photos, the maple curio cabinet loaded with dolls she has never held or played with, well, perhaps a change of scenery would be for the best. Tm getting tired of it," she said to her mother, Geneva Odell. Walk through one door facing the window and the iron lung with Dianne inside is instandy to your right. This entrance, there are three to the room, is at her feet Flat on her back there is no other possible position for her she gazes into a mirror above her head.

The mirror is attached to a long, yellow metal cylinder to the iron lung, what Dianne calls "the elephant in the room" It is through this mirror, about the size of a computer screen, that Dianne Odell sees the world. On the metal of the iron lung she has attached a Freed- but we will meet at least $30,000,1 Va ley Authority gave the Johnson said. "We raised $21,000 family a generator large enough to through Campbell Street power the house. It kicks in auto-of Christ. Other donations havei' maltically if the power goes out.

gone straight to West Tennessee. i If any air leaks out of the iron lung, Healthcare." vn Di; nne notices an immediate drop in Last week, Respironics, the cot her air. Opening the iron lung win-pany that refurbishes and works on' dou-s to take care of her means she old iron lungs, told Dianne's Ids the power to talk. But even with Donna Lewis, that it was not going1 the mechanical and medical care to continue to work on the model issies, Geneva and Freeman were that Dianne has, but the company determined their daughter would will give it to her. s.i haeasmuchof a normal life as pos- They have other models, but sib e.

They had two other daughters, Dianne doesn't really want to', Doina (Lewis) and Mary (Beyer), change," Lewis said. "I just want to and Geneva took in foster children -know, if we take this responsibility, and babysat She also worked for the that there is someone locally who can Red Cross for 20 years, work on it" i We had slumber parties right here Freeman Odell, Dianne's father, in jny room and we'd pop popcorn understands Donna's worries only and get up to all kinds of stuff, my sis-too well. "They sent us home from and me," Dianne said. "One night John Gaston Hospital in Memphis we burned the popcorn and nearly set with no instructions on the iron lung the; house on fire And there are at all. I mean, nothing.

Of course, I've some things we got up to that Mama learned what to do." still doesn't know about" "I used to be afraid it would shut Her mother laughed, Tm quite off," Geneva said. sure there are." WHEN SHE RETURNED FROM "Sometimes, school friends called JOHN GASTON HOSPITAL, 0x1 5 the washing machine, Donna said, her parents had no instructions as to Miiry drew a picture of her family e' 'n er school with Dianne We just figured it out over mie iron lung and her head sticking But there are many days when it's just Dianne, her family and her sitters. At night Dianne's thoughts take wings, far away from the red brick house on the hill. "Have I ever told you about Kip?" Dianne said one day. "No? Well, fve traveled the world with Kip." When she was in elementary school, Dianne began to think of a young friend named Kip, whom she would have met in schooL In her dreams, they've gone to high school and college together.

Kip fought in Vietnam and was a prisoner of war. But he came home to become a doctor. They married, had a honeymoon, raised children. '1 have grandchildren," Dianne said. "And we have homes in Europe and in the mountains and on the coast." "Kip is my dream man," she said.

"He's everything a man should be." But when she's not dreaming, she travels through her computer and visitors and television, and people to meet. "I want to write another children's book if somebody will help me," she said. "I want to meet my favorite soap opera star from 'AH My Asked if she ever wondered what God's purpose is for her, Dianne said, Tve never thought that my having polio meant there was some special purpose God planned for me because I had polio. But I was saved when I was little and it was the most wonderful feeling on earth." Then Dianne added: "Don't write a bunch of weepy Pollyanna stuff about me. Write about my mama and daddy who are Submarine" song because it reminded her of her life in the iron lung.

"I know I've had a better life than other children," she said. There are too many children who aren't loved and have nothing that I've had." SHE DID NOT SIMPLY UE ON HER BACK. Dianne attended school with home-bound teachers and later had a phone hook-up to her class. She was reading at fourth-grade level when she entered first grade. By the time she was 14, she was tutoring students in math and English.

She was an honor roll student and she wanted to go to college to major in psychology. In 1968, after one year of correspondence courses with the University of Tennessee, she went to Freed-Hardeman College and lived with Dale and Laura Buckley. But she only lasted one semester until migraine headaches began. The heachaches lasted for three years. "She used to lie in her room in the dark," Geneva said.

"The doctors never figured out what caused it" "Did I cry? You bet I did," Dianne said. 'It was one of the darkest times of my life. Giving up was one of the hardest things I've ever done." "She is a truly wonderful person," Buckley said. "She told me once that those months in 1968 were some of the happiest in her life." Nearly 20 years later, on May 10, 1987, Freed-Hardeman would honor her with an honorary doctorate degree in psychology. She thanked everyone that day and she told them that coming to Freed-Hardeman was "like Dorothy opening her Kansas farmhouse door and THEN COMPUTERS ARRIVED AND ANOTHER WINDOW OPENED.

The STAR Center in Jackson gave Dianne her first computer. Through her home health sitters, she has stayed in touch with people around the world. With a voice-activated computer, she keeps correspondence going with other polio survivors in iron lungs, including one in Switzerland. John Prestwich, a survivor in England, e-mailed her. One day, a military veteran who'd read her story came to visit and gave her his Purple Heart medal.

1 couldn't believe he'd do that" Dianne said. She also wrote a children's book, "Blinky Less Light" "It's about "the smallest star in heaven that wants to be a wishing star, and a little boy on earth called Benjamin, who is blind and wants to know what stars look like," Dianne said. And she has developed a pretty impressive fan club. Actress Jane Seymour, in town for an art show last year, stopped by and not only expressed interest in helping her publish another book, she introduced Dianne to Superman. Really.

By phone, Dianne chatted with actor Christopher Reeve, star of the Superman movie, who is fighting his own medical battle after he was thrown from a horse and paralyzed. Seymour, known for her role as "Doctor Quinn, Medicine Woman," and her husband, James Keach, have stayed in touch with Dianne. Gary Morris, known for his award-winning performance of Submitted photo courtesy of the March of Dimes The iron lung was widely used after a series of polio epidemics that left victims unable to breathe on their own. umc, ucucvd saiu. 1 naa a new 0U "My teacher picked it up and baby, too.

My older sister stayed said 'Are vou trvinff to be funnv? I become more urgent. West Tennessee Healthcare Foundation administers funds for Dianne. She has a constant need for home health sitters, an expense not paid for by Medicare. "The cost for providing home care can easily exceed $1,200 a week," said Tracy Humphreys of West Tennessee Healthcare. Ironically, the severity of her disease disqualifies her for Medicare funding.

She is paralyzed and cannot breathe on her own. But she does not need skilled nursing care, physical therapy, speech therapy or occupational Hardeman University magnet, a butterfly and a note from a friend. Around the collar of the iron lung is a lovely lavender and cream silk scarf, a gift from her sister. She loves silk scarves and wears a different one every day around her neck. She changes her hair accessories as well and makes certain her long hair hangs in shiny auburn ringlets from her pillow.

She waits to hear voices of visitors when the front door to her red brick home opens, or the voices of her parents talking. Or, she waits to see her sitters come to feed her or school gymnasiums across the land, was licensed. "A few had permanent paralysis; some had no paralysis at all," said Dr. Walton Harrison, who cared for Dianne. "Dianne's condition was tragic and unique." Monday, the March of Dimes begins a nationwide anniversary commemoration of the first polio vaccinations for children.

There had been more than 20,000 cases of polio each year nationwide prior to the vaccine. It was the March of Dimes that feels everythinga normal person does. At night at John Gaston, the nurses would lay white pillowcases over the children's faces, so they wouldn't see the other children die. To this day, Dianne Odell sleeps with a white handkerchief across her face. No doctor at John Gaston ever spoke to her parents about her condition.

"One of the nurses finally told me that Dianne was completely paralyzed and she wasn't going to get any better," Geneva said. "I cried and cried." wanted pictures of your She tore it up. I was crying and I walked all the way home. My mother called the principal and the teacher had to apologize to me in front of the class." with us. I don't think I could made it without her." When Dianne was 10 years old, there was a storm that knocked the power out for about three hours.

The neighbors, doctors, highway patrol, ambulance people, all these her teen years, Mary said Dianne played the Beatles so much that she still remembers the words to mqs of the songs. Dianne loved Paul people pumped the respirator, but the power outage really hurt me," Dianne spell u-A-i i have to say Charlie Alpha Tango, so it took a said. "We had just called the doctor Mjartney "Yellow stepping into the land of Oz." Wind Beneath My Wings," stopped angels on earth. polio survivor. Poliomyelitis polio has been identified as far back as ancient Egypt.

The viral disease attacks the nerve cells, and sometimes the central nervous system, causing muscle wasting, paralysis and sometimes death. Around 1900, cycles of polio epidemics began, with the virus becoming stronger. 1905: Dr. Charles Morgan Hammond of Memphis built his first 'artificial 1916: A U.S. polio epidemic killed 6,000 people and paralyzed 27,000 more.

1928: Philip Drinker and Dr. Louis Agassiz Shaw of Boston develop the first widely used 'iron 1931: A severe polio epidemic led John Emerson of Cambridge to build a simplified respirator that could be pumped by hand if electricity failed. The first Emerson 'iron lung' is at the Smithsonian. 1938: President Franklin Delano Roosevelt, who had polio, establishes the National Foundation for Infantile Paralysis (the March of Dimes) to conquer polio, establishing the first chapter in 1939 in Coschocton, Ohio. 1941: March of Dimes gives first iron lung for polio victims.

1947: Dr. Jonas Salk, head of the Virus Research Lab at the University of Pittsburg, begins investigating the polio virus. 1949: March of Dimes selects Dr. Jonas Salk to lead polio virus research. J.F.

Enders, T.H. Weller and F.C. Robbins created cultures to grow large quantities of the polio virus, the breakthrough that won the 1954 Nobel Prize in physiologymedicine. 1952: Salk tried a refined polio vaccine on children who had recovered from polio. After the vaccination, their antibodies increased.

This killed virus vaccine was injected and called Inactivated Polio Vaccine. Salk presents his findings in The Journal of the American Medical Association in 1953. April 1954: Mass vaccination of children begins. More than 4 million doses are given by August 1955. Cases of polio drop from 28,895 in 1955 to 5,894 in 1957; total from 1937 to 1955 more than 300,000 cases.

1957: Dr. Albert Sabin begins human trials of Oral Polio Vaccine (OPV) that can be swallowed. 1960: March of Dimes establishes The Salk Institute for Biological Studies in La Jolla, Calif. Cases drop to about 3,000. 1962: Dr.

Sabin developes OPV with March of Dimes. 1996: Susan Pierson of Jackson testifies before the Centers for Disease Control on changing from OPV to IPV to safeguard children. Using live vaccine causes 8-12 cases of polio per year in children. 1997: The CDC changes its polio vaccine recommendations: Children get two doses of IPV containing the dead virus, followed by two doses of OPV. 2000: The CDC recommends IPV-only immunization schedule that takes effect Jan.

1, 2000. Olen Kew, a virologist at the U.S. Centers for Disease Control and Prevention, analyzes polio cases on Hispaniola and finds a mutated virus from the OPV strain. 2002: In the journal Science, Kew explains how the virus emerged to cause polio. Dr.

Patrick Zuber, medical epidemiologist with the National Immunization Program at CDC, says the challenges are: to get rid of wild polio in 10 countries; to end oral poliovirus vaccination because if a country keeps a low level of routine vaccination, there is a risk that the vaccine virus can revert to a virulent form. 2004: World Health Organization discusses the polio outbreak in Nigeria that has spread in the past 18 months to previously polio-free countries. The spread is caused by Muslims suspending polio immunizations in Nigeria due to politics. In Gordon Pierson's view Gordon a humbling stare. "I would stare them down until they stopped looking," she said.

It was when she was about 11 years old when she started her Continued from cover "He'll come up with something." PERHAPS IT COULD BE CALLED TEAM He has a physical therapist, an occupational therapist and a mobility trainer who work with him. into the air. No kite flying today for him, but no telling what he might do later. Paula Brownyard, supervisor for special education programs in Jackson-Madison County public schools, recalled one day when she propped his head up. They're just' in me 1999.

The recommended JPV-comfortable with him." on immunization schedule took These kids feel like the only differ-inefti ct Jan. 1, 2000. No cases of acute ence between him and them is that pol omyelitis have been reported in they walk and he rolls," Spivey added. the United States since 1999. From The kids understand how smart vl9f0-1998, there were 152 cases of Gordon is, Anthony said.

"It's the sec-i paralytic polio; 144 were vaccine-asso-ond year for these kids to be with him dated polio; eight were from wild as a group and they've really enjoyed vires caught outside the U.S. that." r' i In But the CDC has reported seven When they play jump rope on cases on the Carribbean island of playground, Gordon rolls his Hispaniola that were caused bv a defense of her brother. Before that, she remembers going to the hospi Gordon Pierson tells what he likes, what scares him Spivey, his nurse. She sits with him in his class at Nova Elementary, and wipes the bubbles from his lips. It's Crazy Sock Day and picture day, so everyone's excited.

But before going to take pictures, the class is studying Earth's changing crust. "Science is his favorite subject" said Janith Stack, his assistant "He doesn't like a lot of people to know how smart he is." He sits in a wheelchair with everything he needs for life support His knee can push a lever that activates the wheelchair. His head can push a switch that directs it And like most kids, sometimes he gets tired of doing his homework "Instead of the dog eating his chair over the rope. I r-- This was 1992. Even the doctors at one of the top children's hospitals in the world didn't think about polio.

Why should a parent? In September 1993, 10 months later, Randy and Susan Pierson made contact with Dr. Gerald Fenichel. He, along with Dr. Karl Misulis, finally diagnosed Gordon. The diagnosis? Vaccine-associated polio.

"We were told Gordon would make a recovery about 18 months after the onset. So at 21 mutated polio virus from the OPV. in- It is also suspected in outbreaks in in Egypt in 1988 and the Philippines In 2001. OPV is still the vaccine of tO rhniro iUa WnrIJ Uanlth THEY WANTED THE EXPERTS TO SEE GORDON. Susan and Randy traveled Atlanta to testify and took Gordon Organization, which gives millions with them.

He sat beside them at the 0f dose annmllv it kn't iniorrihlp table. so children like it better, IJ 'II'- I -i WTTTjnTTnMi i Teacher Shirley Grant stops by once a week and goes over math with Gordon. "He has six nurses," Susan said. "He's surrounded by an incredible team of people who love him. That has to make a difference in how healthy he is and how smart he is." Gordon rides in his wheelchair to church each Sunday and goes to Sunday school class.

When it came his time to recite a Bible verse, they put one on his computer so he could go to the front of the church and say a verse with the other children. But Susan said while he does homework on his computer, he doesn't communicate with them regularly with it. "He hasn't had the "Eureka!" moment that if he communicates, he can control his life," Susan said. "Sometimes he uses the com tal, with her siblings, to play with him, but didn't know that something was wrong, except for that fact that her mother always seemed to be upset. She also says that Gordon's brother, Thomas, now 8, is blunt with his friends.

"He just tells Gordon can't walk and that's the way he she said. "My mom is the strongest woman I know," Erin said. "And my dad is the strongest too. Whenever one of us complains about something not being fair, Mom just says, 'Go look in your brother's room. That's 'NOT "Gordon and I have always had good communication," she said.

"I've been able to relate to him. He'd make certain noises and I'd make them back. I can tell he loves me and I love him. The I I 1 who can take care of the 200-pound wheelchair. They took Gordon to the zoo two weeks ago, and a loose connection made the battery quit.

"I couldn't figure out at first what was going on," Randy said. "It had worked fine when we loaded the van. I guess we hit a bump on the way that was enough to shake it So we pushed the wheelchair through the zoo. It was quite a job. It's always something." They have to prepare for whatever expenses may come as his body ages.

Susan said both Gordon's hips are dislocated and he has severe scoliosis of the spine. Unless they do something about his scoliosis, it could interfere with his breathing. "His lungs could collapse and he could have continuing pneumonia," she said. The orthopedic surgeon says fixing his spine is an incredible risk for blood loss, pneumonia and other things." They will insert a rod in his back," Randy said. "But they do this after his spine has finishing growing." "Youth is on his side right now," Susan said.

The surgery was planned for in his medical settlement Randy said. They tried their best to predict what might come up in his life. There is also an inflation cost written into it The orthopedic surgeon we use doesn't take TennCare," said Susan. "We use Dr. Warner at Campbell's Clinic." Every day they weigh what's best for Gordon.

They have teachers and nurses coming in and out. Susan cannot quite wrap her mind around there polio cases overseas because children are receiving OPV. It seems unreal. "I understand the public health viewpoint that what they do is for the greater good. I have a mother's viewpoint." How many other deaths, she has wondered, have been chalked up to Sudden Infant death syndrome, encephalitis, Guillain-Barre Syndrome, or "neuropathies of unknown etiology" Gordon's first diagnosis.

"No mother and father should have to suffer this unbelievable heartache. You can keep it from happening again," she told the CDC. Susan and Randy's last three children have taken IPV. Submitted photo courtesy of the March ol Dimes In 1952, Dr. Jonas Salk developed the first refined polio vaccine, called Inactivated Polio Vaccine.

and it's cheaper, a factor in public health care in poor nations. An immediate vac-Tlfaiation program in rSspaniola put a stop to spread of the dreaded 'paralytic disease. "This confirms to me the importance of the decision made for the U.S. to change the vaccine recommendations to IPV only," Susan said when she read the Wall Street Journal article on the report in the journal Science. "That's exactly what happened to Gordon.

The virus mutated. I understand about the cost for Third World countries. But you know, I pointed out to ACIP members, if you're concerned over costs, Gordon's life will cost more than $350,000 a year." WHEN HIS SPECIAL months, when Gordon should have been chasing his big sisters, beginning to talk, eating ice cream, splashing in the pool, singing nursery rhymes, learning to throw a ball and visiting his grandparents, he was ventilator dependent, fed through a tube, in a wheelchair, unable to speak, watching watching with those bright eyes. And it didn't have to happen." Susan Pierson said those words before the U.S. Centers for Disease Control and Prevention on June 19, 1996.

Her baby son had a million chance of developing polio from the oral polio vaccine. He was that one. "What's fair about that?" she said shortly after her testimony. 'Til tell you. There's his bed.

He has sliding doors that open out onto his own deck, not only for a nice view, but for an efficient fire escape. His sister, Claire, comes running in to see her brother. "She's going to be my nurse," Susan said. "She's such a little caregiver." Susan said 2003 was a hard year. "Last February, he got respiratory syncytial virus.

Those weeks were really hard for him. Last September he had surgery to release the tendons in his feet, his Achilles tendon, and we went to walking casts. He spent two months recovering from surgery and then he broke his femur when he was being moved, so then it was hard to move him." One of the most frustrating things for her is that when he's hurting, he cannot tell her. If he can keep in his routine and get out and do things, he does pretty well emotionally, she said. But if all he's able to do is stay in his room, that gets him down.

His nurses and teachers make all the difference in his life, she said and in their lives. "We've got what he needs or the ability to get what he needs," Susan said. "We've been so incredibly blessed by the school system. They have done absolutely everything they could do for him. They love him like he's theirs." GORDON WILL HAVE HIS NURSES, TEACHERS and his life support paid for.

In 1997, the U.S. Claims Court recommended $1,000 a day for Gordon's lifetime medical care after studying testimony and reports. His funds, a one-time settlement, are now administered by Juvenile Court Judge Christy Little in Jackson. It was the largest award ever given for a vaccine-injured child. The majority of that is technical," Randy said.

"It goes for the ventilator and 24-hour nursing care. His surgery we paid cash for. He's eligible for his supplies and nutrition from TennCare. They pay for his hospitalization, if it qualifies." Randy said they own two ventilators but instead of paying for maintenance, TennCare regulations require them to rent a ventilator from TennCare. They're not willing to go back to managed care because that means they'd have to accept whoever the managed care provider said they'd pay for.

"We have private duty nurses so we can manage his care ourselves. It's the best thing for Gordon," Susan said. Randy has btfeme a technician This is Gordon's first person discussion of life from his perspective. He gave his parents this information on his Dynavox. His parents programmed in as many options as they could think of and let him choose the things he wanted to say.

His mom, Susan, then put it in a format that she felt made the most sense. When I was a baby, I got the normal vaccines babies get. One of them was the polio vaccine. It was supposed to keep me from getting polio but it gave me polio instead. Polio can paralyze people and sometimes makes them so they can't breathe.

Sometimes people get better from polio, but sometimes they stay paralyzed and always need help to breathe. That's what happened to me. I was in the hospital for a long time. I don't remember it because I was a baby. Some things Gordon does remember: I remember listening to The Runaway Bunny when I was little.

I had a policeman clown that made loud noises. It was one of my favorite toys. Michelle McCrary was one of my favorite nurses. She took care of me when I was younger. What Gordon says about a regular day: I go to school two days every week.

It makes me happy when I get to go to school like everyone else. My teachers come to my house every day too. Miss Mary and Miss Ginger are the best. I don't know what I would do without them. Sometimes I go for a walk outside.

I love to play on my computer. I play on it every day. I am glad to have a computer. My nurses read to me a lot. I love books.

Usually I sit at the table with my family at suppertime. My favorite part of the day is when I get to be with my Mommy. Gordon's best memories: The fun-est things I have done are swimming in my pool, going to the beach, going to NaCoMe campground with my church and sledding down the hill in my backyard in the snow with my dad. What Gordon wonders and what saddens him: I wonder why God hasn't healed me even though my family has prayed for Him too. Some days I am mad at God but I am glad God loves me.

I can't wait to get to heaven so I can run and play. It makes me sad when everyone talks and pays no attention to me, like I'm not even here. It's hard when I can't tell everyone exactly what I'm thinking. It is bad that I cannot be anything I want to be when I'm grown. Sometimes I'm scared like when my trach gets blocked and I can't breathe or when I think about my parents dying.

What Gordon thinks about the future: Jesus helps me every day and because of Him I can be happy no matter what. I hope I can help other people somehow. (When Gordon said this, his Mom reminded him of how many children he has already helped by his presence at the ACIP hearings when the decision was made to change the polio vaccine recommendations.) JANELLE SOUThe Jatkson Sun Spivey wheels Gordon Pierson ud the ramn in tha Carol Elementary. Carol is one of six nurses that help care for him VAN ROLLS into the driveway at 49 Wellington Drive in North Jackson, Til urn i i waniea mem to see what their vaccination had done. We wanted its to a pleasant bnck house with a them to know what life our son would iswimming pool that Gordon's dad, puter appropriately and sometimes he shuts it off the minute we turn it on.

"It is very frustrating to know that sometimes he just won't talk to us at all. He just shuts us out." She admitted she was very nervous about sending him to school, but the kids soon ended her fears. The fourth-graders would hear his wheelchair coming and chant, 'Gordon, Gor-don, White said when she first brought up the idea of sending Gordon to school, Susan would immediately back off. she'd tell me, 'we're not going to talk about it, we're not going to talk about school at all' That's hard. It's a normal thing for it to be hard for a child to start school and it was much harder for them," White said.

"Now it's just part of his weekly routine." Susan looks at Gordon and said she understands that doctors look at vaccinations from a "whole different perspective." "We haven't lived through an epidemic. We have never had to worry about diphtheria and smallpox. I can't imagine dealing with an epidemic. "On the other hand, I'm not certain they understand where I'm coming from. But that is my son upstairs in his room, locked in a body that doesn't work with a bright mind," she said.

visited the Piersons at home and they had just given Gordon his new wheelchair. "There he was going down the ramp, going up the street, 90-to-nothing like everybody else on a new bicycle," Brownyard said. "That's why he's grown so. They've let him take risks. It takes courage from his parents to let him try things alone." As rewards for his doing well with schoolwork, Mary White said she's taken him to the space museum, to the Pink Palace and the zoo in Memphis.

"We took him to Helen Keller's home, and I thought he needed to meet Dianne (Odell) so we arranged that. We had his computer with him. He was into telling jokes then, so I put some jokes on there he could tell her, and he told her what had happened to him. She told him he was fortunate to be able to go places when she could not," White said. On their next adventure, White said she's planning to take him fishing at the handicapped accessible lake in Haywood County.

She and her husband went to the lake and took pictures of it. Now, it's up to Gordon's occupational therapist, Woody Tatman, to figure out how to rig a fishing pole for Gordon. "Woody's creative," White said. nurse says I'm his soul mate." Erin said most of her friends have asked what happened to him. She's told them.

They're always amazed to know that "that stuff they took when they were little made Gordon so ill. What does having a ventilator-dependent child in the house mean? There's always somebody in my house with my family, a nurse is always here. We have to come downstairs presentable every day. It's not normal, but it's normal to me. Probably when I move out and into my own room, I won't know what to do with myself," she said.

Erin said she's already told her parents that if they die before Gordon, she'll take care of him. "Anyone I marry will have to understand that I'm going to take care of my brother," Erin said. "He's on the honor roll, you know," she said. "It's very exciting." THEY LET HIM TAKE On the first warm day of spring this year, Gordon was out in the yard watching Claire fly a kite. He had on his cap and shades.

Carol Spivey blotted at the bubbles at the side of his mouth and adjusted his cap to keep the sun out of his eyes. He blinked into the bright light and followed the kite as lifted high nave, rtna we aiant want any otherI Randy, built almost by himself, parents to go through what we Randy is a full-time minister at going through," Susan said. 'Fellowship Bible Church, Susan, a Susan and Randy's campaign to Stay-at-home mom in a crowded have the Advisory Committee on house. Gordon has four sisters, a Immunization Practices change their brother and his nurse is included in recommendation from all Oral tthe family; too. (weakened) Polio Vaccine lo-; Carol Spivey lowers the wheel-Inactivated (dead) Polio Vaccina -rhair ramn in the ffround and homework, the trash can on the computer does it" Carol said, grinning.

"He's so fast we can't stop him quickly enough." "We try to make him feel a part of the class," Stack said. "He loves coming to see his friends." Every Tuesday and Thursday from 8:30 to 11:30 a.m., he gets to go to school. He loves it Mary White, who teaches him 4j hours of reading, language arts and communication, has been with him as a homebound teacher since he was 3 years old. "I sure do love him," White said. "I would have felt so left out if I hadn't met Gordon.

And he's been wonderful for the kids at school. One day as I walked into his classroom at Nova, his saliva was drooling down his chin a bit, and a student just went over and wiped his chin with a clath and nothing fair about it at alL Why should my son have to pay the price for the greater good?" GORDON, NOW YEARS OLD, READS TO HIS CLASS at Jackson's Nova Elementary School under the guidance of his teacher, Jaime Anthony. The dot on his forehead is a switch that moves his mouse. The computer's voice reads to the fifth-graders, since Gordon cannot. He can't swallow, so saliva dribbles down his chin.

His head has a tendency to fall to the side. But his big blue eyes don't miss anything going on around him. He cannot speak. He cannot breathe on his own. He cannot eat, except through tubes.

If his trach tube blocks, he turns blue from lack of oxygen. "He is very smajrt," said Carol succeeded. i Gordon goes to an elevator to ride March 2004, the vaccinations begin again. April 26, 2004: March of Dimes commemorates the 50th anniversary of the first vaccines that were given at Franklin Sherman Elementary School in McLean, Va. Among those planning to attend will be Anna Eleanor Roosevelt, granddaughter of March of Dimes founder President Franklin Delano Roosevelt Sources: Respiratory Care magazine, July 1998; March of Dimes, World Health Organization, Centers for Disease Control, PBS, Wali Street Journal, THE NURSE SAYS I'MHISSOULMATL' Erin, 16, is Gordon's big sister, her brother's keeper and his defender at the mall.

She takes him there and when the stares come, she They have known for years that up to his Toom. It will take a little oral polio vaccine can cause the dis-awhile for her to help him settle, ease," Susan added. "We thought we i She'll clean him up a bit after the were doing what was in our child's morning at school and clean out his best interest. It wasn't our pediatri- i tubes. His room is painted blue cian's fault.

He was doing what was with Spiderman posters on the wall recommended, and what caused no, rand a Spiderman pillow. There are problems for all the other children." posters of Tennessee Titans ACIP changed its policy on polio quarterback Steve McNair and vaccination in early 1997, and again, Tarzan and goldfish bquarium by Erin stares right back. It is atfiard stare,.