European Stars and Stripes (Newspaper) - June 06, 1977, Darmstadt, Hesse Jason a restricted world full of love Page 14 by Robert Carey United press International Ason White age 6. Handsome husky and Blue eyed with Brown up milk hair looks i out his bedroom window in Texarkana tex.,i thinking probably How Nice it would be to 1 play outside in the Sunshine again but for now he must wait. He sits in his chair in front of his Little desk his hand folded patient and resigned. His eyes made bluer and More Luminous by recent tears Are Calm Cheeks so round arc tinged with Pink flushed from outdoor play in the fort they built for him in the front Yard from Riding his Bike and from throwing and catching the Ball that swings from a rope tied to a limb on his old Maple tree. Above him in his room on a Metal stand partially obscured by the headboard on his bed the Clear plastic bag of Golden parental hype alimentation fluid has been reattached once More. Soon he must leave the unrestrained world of play and Hook up to his life supporting tube. The tube connected to the base of the bag to Quarter of an Inch in diameter and spirals Down into a pumping unit. The fluid from the bag drains slowly into the unit which forces it through an Extension tubing about six feet Long. The Extension tubing fas tens to a third tube in turn connected to the silicone Elastomer Central venous Catheter precluding about three inches from an incision in Jason s Chest. Tubing an eighth of an Inch in diameter is inserted into Jason s subclavian vein threaded into the Superior Vena Cava and finally rests in the right atrium of his total hyper alimentation solution of amino acids sugars vitamins and minerals ingested into him in this Way has sustained life for Jason White since infancy when a rare syndrome refused to let his body digest Foo taken orally. Each time he tried to digest even the Small est bite of Cracker it would trigger hours of wracking vomiting and diarrhoea. He was literally starving to death when the hyper Ali mentation process was begun. For three and a half years he was on it 24 hours a Day. He practice walking with the Ever present Golden bag of fluids swinging above him affixed to a stand equipped with rollers. He could even idea trickle with it attached. He really should not be alive said one doctor familiar with the Case. And indeed Many times death was he is in the Best health Ever attends kindergarten can eat Small amounts of most any food with usually no bad consequences stays off the apparatus for hours at a time and in a recent . Test scored 137, denoting Supe rior intelligence. There is growing Hope that Jason the child will live Tobe Jason the Man. We re still not out of the Woods said or. Jon Hall paediatrician who has been Jason s main doctor since initiating the intravenous feeding when Jason was it has been an exciting year. He is just a Little Mira Cle miracles still happen it would seem but in 20th Century America in the first year of her third Centen Nial medical miracles Cost enormous amounts of Money and can financially devastate a family. Such is the Case of or. And mrs. Edward e. White the parents of Jason who Likely will never in their lifetimes Short of massive Public Charity climb out of the debt int which Jason s illness dug and continues to dig them that s a fair observation said or. Hall who Lon since quit charging them for his services. It is he said pausing to think of the right words not s something wrong with a system that forces people into bankruptcy before they can get free Jason White was Bora oct. H. 1970 at Hope ark., the first and Only child of de and Cindy White. There was Little unusual to note at the time except Jason was bigger 9 ibs. 1 of and better looking than most babies a proud father s first words recorded in his baby boo were. He s a Beautiful and the first thing his Mother wanted to know was if he had All his fingers and toes. Those were All there but another problem developed slowly one that was not to become fully apparent until Jason was More than a year old. It vent All but unnoticed in the first few months of his life. Jason kept spitting up his formula not unusual in infants and was having trouble with diarrhoea. Still he gained weight and grew normally. But the trouble persisted and gradually worsened. The stars and stripes when Jason was 18 months old it was recommended paediatrician take a look at him and Sincel Here were none in Hope mrs. White picked the name of or. Hall out of the Texarkana phone Book. Texarkana 30 Miles South West of Hope was the closest City that had a . Hal found Jason to be hype secreting digestive fluids which were potentially so acid they might eat through his stomach Walls. As it was intake of the slight est amount of food orally set off vomiting and the symptoms appeared without eating. Jason s condition deteriorated. Skin and Bones or. Hall said. So it was decided to insert toe Catheter and begin Fout me intravenous feeding. Or. Rober Bransford a Texarkana surgeon with or. Hall As stating performed the operation and on March m,197j, Jason was placed on . He was not quite 4 years of. For the first nine months he grew faster and was us moderately to this Day. Periods of Good health would be followed by periods of bad he would lose weight his system seemingly reject ing the hype alimentation solution. He would gradually grow More and More listless sleep More become almost comatose and near death. Then just As mysteriously he would begin to recover gain weight become livelier and soon be As mrs. Norman Cochran or. Hall s nurse described him so full of Energy he just otherwise healthy Jason is an engaging adorable child. He has an almost political Knack of remembering everybody s name and simply charms whomever he meets including All the doctors and nurses who Ever worked with m in love with him said mrs. Vicki Bennett a registered nurse who cared for Jason during his fist month sin Texarkana and now lives in Shreveport. One Day he just started calling me aunt Vicki. Aunt Vicki nowhere do you suppose he came up with that like others mrs. Bennett donated her service free of charge spending Long off duty hours helping to care for the operation to insert the Catheter Jason was moved into a room at Wadley Hospital Texarkana,tex., so his round the clock care could be monitored. For most of the next three years this was Jason s family moved from Hope to Texarkana so they could spend As much time with Jason As Jason Felt Good he was. As described by several Jason just talked All the time mrs. Bennett said. He d remember everyone s name and everyone on the floor All the doctors just loved him. They d All Stop and talk to him. He never forgets anybody s name. Six months from now if he sees you again hell Call you by . Bennett said she had always wanted to be a nurse. I love being a nurse working around children she said. But things happen and you can t understand. You can t understand Why they die sometimes. You can understand Why this happened to Jason. All you can do is wonder that s what the world of Medicine has been doing about Jason for several years wondering Why. In february 1974, after extensive testing at Texas children s Hospital in Houston Jason underwent a Gastrectomy removal of most of his stomach. The medical thinking was that if food could bypass the stomach and go straight to the Small intestine then maybe the destructive hype acidity could be circumvented. Jason might subsist on several Small meals a Day and be weaned forthe most part from the hype alimentation. The operation initially at least seemed to make Little difference in Jason s Boom and bust cycles. Jason re turned from Houston to his room at Wadley and they continued. The Nadir arrived in july 197s, when Jason Lay Semi comatose for Days his Bones actually showing some of the signs of deterioration found in the very elderly. Twice the family made funeral preparations. But Jason Lin gered on. Literally refusing to . Hall said it became so hopeless and Jason was in such pain that they unhooked him from the hyper Limen tation to let him die in but or. Hall said he began to realize something was wrong that he was no getting what he was supposed to. He started crying wanting to be put Back on. It is one thing to let a child die in peace he shakes his head slowly. There Are no words. They booked him Back rallied again. This time improvement was steady and the bad spells less frequent and less severe. In february 1976, they decided to Send Jason i alimentation apparatus. Bags pump and that s where he is today. Since Jason s Gastrectomy a new medical Ihas been advanced As to the real close to trouble. Or George ferry assistant professor of Baylor College of Medicine and head of t astrological Section of Texas children s Hospital about it recently. We be never been Able to prove it ferry Jason s symptoms parallel what is known As the or Ellison " the syndrome unheard of previously i Jason s age. Is caused by a tumor probably to areas or the Central nervous system which abnormal hormone or an increased numb. _ hormones which in turn Are responsible for the he had All the symptoms to go with a Tumo never could find one. Ferry said. It had been planned to return Jason to Houston Spring for further tests but since he was doing Sot " enjoying life so much. It was decided to let Bun school and go to Houston later in the summer. We re interested in finding a Way to so he can eat More ferry said. Maybe some hormone tests to see if we can find any did or. Ferry think Jason has a Chance i think he s got a very Good Chance ferry May have them again periods of decline Bot weathered a lot and he s doing so Well i think he la very Good the Whites never received a Bill from or. Ferry. Keeping Jason at Home is possible Mother literally trained herself As a none. She kit a a possible for keeping his feeding Pantas Rassul As Well As keeping track of his different Meav tons. She can take care of him better than any mine or. Hall said. I Don t know now she do0� Don t know How she has kept there is about Cindy White now 31, an air of Calof of cuteness. Her voice is measured soft one feels tag Lively that she is someone to have on your Side , Well always be in debt she says Matt factly. Well never get it paid. But we have Jam that s what s important she attended Arkansas state teachers Colleg Ethe University of Central Arkansas for three Yean Joring in special education and then attended but College at Jonesboro. I guess i never really de what wanted to be she night after de drove Home from work to commutes Between Hope and Texar Kent a Coffee and donuts they talked about their lives. De assistant service manager at the Hope Auto co., 11took to make More Money to pay for Jason i u before that he was a High school football coach teacher. We be had some fairly close Calls Here at to Cindy said. It s rough sometimes when Hes Sec night. You get tired and you wonder when you re Gorget some a a. Her son she said had been the ought Jot a much pain and suffering. Some of uhf to St Art severe she said. They run Hose to my Jet of not very comfortable. Jason s a Miracle child
