mi beag eetbstei Mo US MESES oa cM , "y Sietly mere . , Me, Kasal Parsons did a lot of work promoting motor-soccer while living at Anscombe House. Kasai (right) posed with two of his Anscombe Pacers team mates, Rick and Luke, for the November picture in the Arbutus Soc the same month Kasal’s life was claimed by mu lety for Children 1989 calendar. The picture appeared scular dystrophy. — ae - . Kasai Parsons Attaining dreams in spi Editor’s note: The recent “Boot Drive’’ by Terrace and Thornhill firefighters focused — local attention on the fatal disease called muscular dys- trophy. The mother of a local teenager who died ‘a. month ago of muscular dystrophy spoke to our staff reporter recently. This is the story of Kasai Parsons. Kasai Parsons had a dream he shared with Victoria Times- Colonist staff reporter Doug Kelk a short while ago. ‘I want ‘to go to Las Vegas to present a video of us playing motor-soccer to Jerry Lewis on his Labor Day telethon,” he told Kelk. “We just need a donation of a couple of thousand dollars to do it.”’ Kasai wasn’t able to live out that dream, though. At the age of 16, his life was claimed by - Duchenne muscular dystrophy. by Tod Strachan Kasai was born in Dawson Creek on Feb. 19, 1973. He was a healthy baby and ‘‘everything looked fine” says his mother. But two years later it was ob- vious there was something wrong. For one thing, he couldn't run, When he tried, it was more like a fast walk. And stairs were also a problem. ‘“‘He - would fall down a lot,’’ remembers his mother, And in time, she says, ‘“‘He began to look like an old man.” - ‘The family moved to White- horse when Kasai was about two years old and a general prac- ticioner there asked if there was a. family. history: of muscular dystrophy. But there wasn't. After several more questions, and still unsure of the nature of Kasai’s problem, the doctor taped his overlapping toes apart. This treatment didn’t help and unsatisfied with the family doc- tor, his mother made an appointment to see Terrace: based pedriatrician Dr. K.O. Asante on his next visit to the Yukon. - Dr. Asante identified the problem within minutes. After putting Kasai through a few ex- ercises of sitting, standing and walking, his mother learned the truth. Asante was certain that Kasai was suffering from muscular dystrophy; a devas- tating disease that kills its vic- tims in their mid to late teens. A short time later, tests confirmed Asante’s diagnosis. _ Kasai’s condition gradually worsened and by the time he was nine years old, he was confined to a wheelchair. At first, his . wheelchair was a regular model. He still had enough strength in his arms to maneuver. But as the disease progressed, movement became more and more difficult and the hand-powered version. was replaced with an electric wheelchair. ‘‘He was really proud of that chair,” recalls his mother, “and his friends were really envious of him:” | Muscular dystrophy ‘con-- tinued to take its toll, however, and in 1986 Kasai had'the first of several painful operations to relieve the physical distortion caused by the disease. Following. each of these operations, Kasai would spend several moriths dealing with splints or a cast. This caused him even greater difficulty in getting around. He slowly recovered after cach of these operations, but to a lesser degree each time, and soon Kasai required 24-hour care. He required assistance even to roll over in bed. So at the age of 13, Kasai was moved to Anscombe house, a special care unit at Queen Alex- . andra Hospital in Victoria. ‘“He wasn’t too happy with this at first,” says his mother, ‘‘but he had so much more freedom there and soon made several friends.” She explains that Anscombe House was designed for young. people who shared .. te of it all Kasai’s difficulty’ in getting — around and he was.still able to visit family and friends in Ter- race on holidays. Still, his condition worsened. In time, he couldn’t hold. his head upright and had difficulty feeding himself. A year ago Kasai underwent another pain-- ful operation. Steel rods were in- serted in his back to help him sit upright. The ‘results of this operation, though, were dramatic. He could sit upright and, according to his mother, his life was much more. com- fortable than it had been before. To this point, you may have a dismal. picture of young Kasai Parsons’ life: Watching friends — with muscular dystrophy die while coping with the ultimate - end of his own fatal affliction, -realizing’ he: was unable to fend for himself and living with un- “bearable pain much of the time © — these were facts that couldn’t be-changed. But there is another ~ side to his story. One of a bright young man with the courage and determination to face each new day. Kasai was bright. He was always an ‘‘A”’ student... even ‘when ‘he missed months of school due to an operation. And Kasai had apleasing personality. He attracted friends in droves. He was also a great organizer and spent the last year of his life organizing and managing a game called . “motor-soccer’’. Motor-soccer is a cross between football and soccer played by four-member teams. It was in- vented by Wayne Johnson about eight years ago. Johnson was 4 resident of Anscombe house. at the time and has since died. Under Kasai’s guidance, motor-soccer became a signifi- _ cant sport in the lives of many disabled young people. Kasai put a new energy into the sport. He designed T-shirts, raised funds and organized tours. “He —-» .gontinudd on page 164 7 Pe ast cava), Bar om bg a mh A bye te AN Ae ee ahd Inforrnation concerning the Twin River Estates project is available from the Skeena Senior Gltizens’ Housing Soclety office, comer.of Apsley Street and: Lakelse | — . Avenue, each Wednesday from 2to4p.m.- | The Skeena Valley Model Train Club meets every Mon- 1 day-night at 7:30 p.m. at 5010 Agar Avenue. Large layout under construction, Everyone welcome! Week of December 4 — Financial problems? Free and. confidential assistarice is avaliable from a provincial . government debt counselior during the week of Dec. 4. For an appointment call 627-1364 -In Prince Rupert, 638-3200 in Terrace and 632-6188 In Kitimat. For further information, contact Guy Pocklington, Ministry of Labour & Consumer Services at 660-3550. Wednesday, December 6 — Terrace Public Library presents “Travel Talk” for armchair travellers, or for those who ‘really plan to “get up and go”! Travel con-- sultant Theresa Brinkac will show videos and share some of her experiences in a series of informal talks about countries she has visited.’ Tonight’s topic ts Hawail. Time Is 7:30 p.m. Admission Is free, everyone is welcome! Phone the library at 638-8177 for more infor- mation. - Wadnesday, December 6 — NOTICE TO GOLFERS: The annual general meeting of the Skeena Valley Golf and Country Club will be held at 8 p.m. at the clubhouse. — Wednesday, December 6 — A Christmas bazaar will be held at Veritas School gym, 4836 Straume Ave., Terrace, - from 5:30 to 7:30 p.m. A light. supper will be available — (grill for hamburgers and hot dogs). Dec. 7, 8 and 9 — The Terrace Little Theatre Is. pleased to present a revival of the English suspense thriller ‘Ladies In Retirement” by Edward Percy and Reginald Denham, directed by Ken Morton. This three-act play was.originally performed by the Terrace Little Theatre in 1957. and will be appreciated by fans of traditional ~ British melodrama. The six performances will be In the _].:MeColl Playhouse on Kalum St. at 8 p.m. The first per- “formance will be a two-for-one night. Friday, December 8 — The third Kitsumkalum Girl Guides will be holding a craft and bake sale from 6 to 9 p.m. at the Terrace Shopping Centre. December 8 and 9 — It’s a puppet show!! at the Terrace Public Library on Friday at 7 p.m. and Saturday at 2 p.m. Come and see the Incredible adventures of “Molly - Whupple ‘and the Glant”. Admission is free and everyone Is welcome. For more information, please call the library at 638-8177. December 8 and 9 — Mills Memorial-Hospltai Auxillary - will be selling tickets for a Christmas draw. First prize is a food basket, second prize a craft basket, third prize a hand knit baby crib cover. Tickets are on sale both days trom 10 a.m. to 3 p.m. at the Terrace Co-op. The draw will - be held on Dec. 16 at 3 p.m. at the Hospital Gift Shop. Saturday, December 9 — All Skeena NDP members are invited to a meeting with the executive of the Provincial |- Skeena Riding Assoc. to discuss the date of the | nomination convention at 1:30 p.m. at the CPU Hall on Enterprise Ave. in Kitimat. For further information, call 632-5890 In Kitimat. oe Saturday, December 9 — There will be a meeting of the B.C. Seniors’ Games Society, Zone 40, at the Happy Gang Centre, 3226 Kalum St., Terrace, at 1 p.m. For fur- ther Informatidn, contact Dorothy Cheyne at 632-3871, Maxine Smallwood at 635-8648 or Shirley Cochrane at . 624-6885. " Saturday, December 9.— “Tools For Peace” donation day. Help bulld a new Nicaragua — 10 a.m. to 6 p.m. in the Skeena Mall. The people. of Nicaragua need notebooks, safety gear, rubber boots, farm tools and cash donations. For more information or donation pick- up; call Frances at 635-2436 or Nancy at 638-8393. Sunday, December 10 — Closing date for tickets for Choices Christmas party to be held at the Arena. ban- quet. room at 6 p.m. (dinner and dance) on Dec. 16. Tickets are available at Terrace & District office, 2-3215 Eby Street, phone 635-7863. Saturday, December 16 — Mills Memorial Hospital Aux- iliary will be holding their draw at the Hospital Gift Shop at 3p.m. First price isa food basket, second prize a craft -basket, 3rd prize a hand knit baby crib cover. Members of the Ladies’ Auxillary would like to thank all those who supported them by buying raffle tickets. Tuesday, December 19 — Friends and Familles of Schizophrenics Support Group will be meeting at 7:30 p.m. in the Mills Memorial Hospital psych conference room. Contact Mental Health at 635-3325 for further in- formation. December 20 and 21 — Centennial Christian School presents the Christmas musical, “The Inn Kaper”, on the 20th at 1:30 p.m. and at 7:30 p.m. on the 21st In the schoo! gym at 3608 Sparks St. in Terrace. Small children alcome. . .