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Show ... By SGT Dave Pinnick and Sheila Gibson thing like a cure. Since their birth, part, of Jamies and Benjamins days, are taken up with a head-to-to- e inspection of their bodies for the blisters that form, almost every day. Treatment and bandaging the sores, with a special petroleum-jelly-coate- d gauze (similar to those used on bum patients), antibiotics, ened special clothes, modified diet (such as pre-so-ft foods of high protein content), and restricted activities take part of each day, too. ONE. OF Sheila Gibsons biggest fears is caused by uncontrolled pets in the housing area. On those rare occasions when she does let the children out to play in their yard, she worries that one of the dogs or cats might jump on the kids, knocking them down. Because of the delicate nature of the childrens skin, a playful pet being friendly, can cause massive blis- Everyone has probably heard the familiar nursery rhyme of Humpty Dumpty and how when he fell, no one could put the pieces t9gether. again. For Jamie and Benjamin Gibson of Dugway, and hundreds of others like them elsewhere, its not a fairy tale but a way of life. Jamie and Benjamin have a genetic skin disorder called Epidermolysis Bullosa (EB for short), which is a "breaking down of 'the tissues that compose the skin. Any abrasion, any scraping of the skin, even the simple friction caused by most clothing is enough to cause blisters to form. EB victims, when they have the most serious or dystrophic form can have blisters on most mucosal membranes of their bodies, such as their mouth, tongue, pharynx, esophagus and anus. This is in addition to blistering of the skin on the outside of their Ixxlies too. For Jamie, age three, and Benjamin, age four, this can make the simple act of eating or brushing their teeth a painful, and sometimes impossible experience. SOME OF the common symptoms that Jamie, Benjamin and others who have EB can experience are such things as painful bowel movements, loss of body fluids, anemia, malnutrition. Victims of EB can also lose hair, fingertoe nails, have malformed teeth and have webbing lietween the toes, or the hands (as Benjamin has). For Benjamin and Jamie, every day is touch and gp, a tattle for sustenance, to survive without hurting themselves. Every day is usually accompanied by the constant pain of raw, tender skin, or the necessary pain of having blisters treated so they wont spread further. For Jim and Sheila Gibson, the nightmare began four years ago with the birth of Benjamin, while they were stationed in Japan. Ben is their second child; they have an older son, Aaron, age 6, who is perfectly normal and doesn't have EB. - The doctor who was treating Ben, advised them of his condition, and recommended that they institutionalize him, (EB victims are usually afflicted with it from birth). The doctor, because of insurance and treatment difficulties refused to further treat Ben, and said he doubted the youngster would survive long anyway. IT WAS A heartrending decision for the Gibsons but in the end they decided to keep the boy with them, doing what they could for him. Sheila Gibson said, Were living each moment as it comes, and thankful for each we receive." Thirteen months later Jamie was bom, also with EB. At that time, almost nothing was known about EB, its causes or possible treatments, let alone any . 'Guess whos. In non-adhere- mni , i i j-- i J tering, and tremendously add to the threat of infection. Recently though, the Gibsons discovered D.E.B.R.A. (Dystrophic Epidermolysis Bullosa Research Association), a world-wid- e organization dedi- cated to bringing this genetic skin disorder out into the open. D.EB.R.A. of America was founded in 1979 by Ms. Arlene Pessar, R.N. and a group of other parents whose children have EB, as a And informational organization. Ms. Pessar d formed the American chapter of the and she EB with son was bom her after organization discovered that there was very little help or informaself-he- non-prof-it, tion available on it. SINCE ITS formation, D.E.B.R.A. has sought to enlighten the public, provide information to families of EB victims, and encourage study into EB. The group hopes that by familiarizing doctors With the disease, it would be easier to them to diagnose it when they see it, so that they could provide the proper information for treating the symptoms. Though the exact cause of EB is unknown, some recent evidence has lead to the belief that an increase in collagenase, (which breaks down the substances that cement the layers of skin together), is partly responsible for the disease. Why and how this occurs is not exactly known, and is one of the things the group is promoting research into. According to statistics released by D.E.B.R.A., as of January 1981, there were 1000 cases of EB in the US alone, contrary to the handful that was originally predicted by medical authorities. SOME OF the experiences shared by EB families, was explained by Sheila Gibson! Some of the stories shared by EB families have been devastating. The problems and obstacles that have been encountered are staggering: such as mothers who cannot hug . ' 'a A fiL .1 SL&Z ttJ&XSPS&W&A, , lp British-founde- .V . sl: i) I . . ' . Benjamin, although a victim of EB, wants to be a photgrapher when he grows up, and here he proves his ability to ham it up on this side of the camera, along with his older brother, Aaron. heir babies for fear of causing massive injuries; child- ren who need monthly or blood transfusions; children afraid to walk at age five; babies bom so blistered that they spend months in special bubbles or incubators in isolation, fighting for their lives; EB children not being allowed by parents of normal kids to play with their children for fear that their blisters might be catching; children with EBnot allowed to attend school; babies that have to be stretchered to be moved; these are just a few of the horror stories that EB families tell. D.E.B.R.A. is attempting to bring about increased awareness by the medical profession, to motivate increased interest into research of EB, because it is such an understudied, and misunderstood disease. In an effort to do that, and earn money for research into all forms of the disease, the Utah Chapter of D.EB.EA., as part of a nationwide fund raising from campaign, is sponsoring a local Weigh-i- n for those wishing to participate April will be on March 31 at the clinic, and parties interested in the or finding out more Diet-a-Tho- about EB or D.E.B.R.A. should contact Jim or Sheila Gibson at 3292 for further details. D.E.B.R.A. acquired its name from a young girl, Debra Hilton, now deceased, who had EB and weighed 19 pounds at the age of 15. For the Gibsons and hundreds of other families who have children or other family members with EB, the disease is a terrible reality. Each day is a struggle against pain, injury, and infection, caused by a disease that little islcnown about, and even less can be done for the victims of. To them, the saying,' Life is fragile, handle with care, takes cm an even deeper meaning, because of the fragile nature of their childrens skin. They never know which bump or scratch may be the one that could lead to an infection that could cost them the lives of their children. So they carry on, caring for and treating their children with antibiotics, watching over and protecting them as best they can. They continually hope and pray that some day a cure or treatment will be discovered for Jamie, Benjamin and all the other Children of Glass. ' m 0. Diet-a-Tho- n, . . and Out Verna Stelling of Community Activities. Receiving not only Outstanding Performance but also Sustained Superior Performance awards were Jerald Norrington of Optical Data Branch and Roy Keeling of DMIS. Vera Zaccardi received an outstanding performance award coupled with a quality step increase. - Sustained Superior Performance awards went to Grant Lundy of Facilities, Max Green of MTD and . .angst on, (Dining Facility), Fire Department, Carolyn M. Palmer, CPO, Jerry Zumwalt. W. Steelman, Chem Lab. Heading out over the pass for the last time are: CW3 Frank Kanauka, MSGT Andy and Bobby The following folks received well deserved pats on DiCarlo, Merwin S. Dunham, Lynn Gore, Carma the back for helping us do things a whole lot better Iamb, Dr. Mort Rothenberg, Konnie Rydalch, here. Barbara Stookey, Lyriette Gilmore. Suggestion awards went to William Goodnight Ronald Rewerts, SSG Ruperto Gutierrez,-SGof Logistics, Sheiden Smith SGT Willie Johnson, and changing clothes and and Dorothy Waldrop of Facilities, Dixie Zumwalt of Admin, Don I losses SP5 C. Ilobson. Weatheihead of MT and Don Kirk of Plans and ' Operations. An outstanding performance award went to SP5 Jose Cotto, SP5 Mike Stamm, SP5 Ed Torres, Doing things better: Rindlisbacher and Teddy Van Ausdal of Security. Quality Step Increases went to Lucille Fait of the Commanders Office and Wilbert Taylor of MTD. Last, but by no means least a Certificate of Achievement went to Leona Glavin of the, Communications Command. We hope these smll tokens of our appreciation help convey our pride in you all for your interest and efforts in making Dugway a better plaice in which to work and live. Movin up re-icti- on LUiliUi U'9Ghv W S'.'. . i. 882-005- 0. vs ' 981 --NEW CHEVROLET TON PICKUP DELTA 88 ROYALE ini Tinted glass, body side moulding, front stabilizer bar, 4 spd. trans., gauges, aux. fuel tank, painted step bumper, economical 6 cyl. engine and more. VIN. Sedan. Loaded with. a. c., cruise control, tilt wheel, stereo. 8 clock, AM-FM track, pulse wipers, convenience group, 5.0 litre 8 engine and more. VIN 184803. List Price $10,240.59 IrS I 108417 Ust Price $7963.55 Nowomy gg nm t USED CAR SPECIALS CITATION 4 dr. air conditioning, power brakes, auto transmission, power steering and more. Originally sold nejw here. Now Only 80 CHEV n, 58 N. Main St., Tooele, Utah or call (801) News items for publication should lie sent to the Public Affairs Officer, Dugway Proving Ground, Dugway, Utah 84022, or call (801) 522-2- 1 16. V. NEW-- 1 NEW 1981 NEW OLDSMOBILE Now Only the refusal to print advertising from that source. Business and advertising matters concerning the paper should lie addressed to the Tooele Transcript-Bulleti- &4074 s&XH V-- The Deseret Sampler The Deseret Sampler is published Publishing y the Transcript-Bulleti- n as a civilian Utah of Company Tooele, of personnel nterprise in the interest t Dugway Proving Ground, Utah. n Everything advertised in this publi-atiomust le made available for nirch&se, use, or patronage without egard to race, creed, color of national or irigin of the purchaser, user, iatron. A confirmed violation or of this policy of equal oppor-unit- y by the advertiser will result in . Farren Duncan, Dennis Cochrane, Wayne . WE KNOW TRANSMISSIONS! The average automatic transmission has over 1 ,000 parts in it. Would you trust yours to someone who doesn't have factory The Sampler is published twice monthly by offset method. training "THEY GOT TO BE -- -- nt and SP4 Oliver Henson. In the civilian sector, hearty Dugway howdy to the following new- another rung up the promotion ladder has been comers: PVI J. Craner, IUIC (Mail & Records), SP5 S. Andrus, Michael K. Antry, G. Turcios ASLM (Met Team), SGT T. Rhuebottom, gained by: .Janell M. Cannon, Cynthia F. George, Marion L. IUIC (Weapons Systems), SFC D. Kulac, IIHC Dorothy Paul F. Gourley, Kimberly A. Ilathun, Neil Gibson, (Michael Army Airfield), SP5 J. Bogan,(65th MPs), D. Lewis M. Nielson, Linda S. Rewerts, McCrone, PVI G. Keith, (Communications Det.), SP5 L. Glen R. Rowberry, Verna L. Stelling and Dixie Paul II. Formolo, I IUIC A , $5895 79 CHEV MAUBU CLASSIC4 dr., air cond.. vinyl roof, power steering, power brakes and much more. 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