PAGE 2THE CANADIAN STATESMAN, SEPTEMBER 20,2000 Rare disease strikes two boys Mom seeks other Durham parents of kids with tuberous sclerosis msw ujxjti tM -i by jane McDonald Sta ff Writer Nobody said life is easy or fair. !■ So with not one but two young children suffering from a poorly understood, life-threatening disease, Lori Chapman has her hands full. What would be helpful as she ànd her family struggle through some pretty tough times, she says, would be to talk with other parents of kids with tuberous sclerosis. ; "This is a genetic disease," explains the 44-year-old mother of five children ranging ranging in age from five to 24. "There is no cure." - With the exception of burn-like markings on the "skin of some children with 'tuberous sclerosis, the Chapman Chapman brothers appear to be good-looking, normal kids, perhaps a bit small for their age. But Christopher, 7, and Brett, 5, were born with the genetic disorder which means the family lives each day in fear of seizures, tumours, organ failure and behavioural problems. "Small tubular-like tumours tumours arc found in the brain which cause seizures," continues continues the concerned mom. '.'These tumours can spread to the heart, lungs and kidneys and the disease causes developmental developmental disabilities, autism, speech delay and behaviour challenges." t Both boys arc in school. Christopher attends a Special Education class at College Hill Public. School while Brett goes to a nursery school half days. But because his seizures cause Chris to become become very tired, he is often Sent home from school because because of fatigue. He's also share with us tire experiences they've had with their children children that arc affected by this A.J. GROEN/ Statesman photo Lori Chapman with sons Christopher, standing, and Brett. Both boys suffer front a rare genetic disorder. Mrs. Chapman would like to meet other families dealing dealing with tuberous sclerosis. been very depressed, according according to his mother, because of the anti-seizure medication he must take. Brett, the youngest, doesn't doesn't speak and was only recently recently toilet trained. He also had to see a neurosurgeon recently recently because there is a tumour tumour at the back of his head. "It's somehow connected to his spine," says the worried mother. "Brett was born with so many major problems, for the first six months of his life he was in and out of hospital. "We would like to meet other families who would disease," says Mrs. Chapman whose Oshawa doctor has told her a half-dozen children diagnosed with tuberous sclerosis sclerosis live in the Oshawa-arca. "We'd also like to make the community aware by coming together to help find a cure. "Chris's behaviour last year at school was hard for us as parents to understand and it whs hard for the teacher," recalls recalls Mrs. Chapman. "He was hitting and spitting and just laying on the floor. It was hard to understand why. Now lie just gels on his bike and goes and doesn't understand safety issues. We don't want him to go too far away from home in case of seizures. "If we had a support group, we could share the things we've all learned," she adds. "We were told the boys could be in wheelchairs ... The only (tuberous sclerosis) association is in the United Slates. "I need someone I can be face-to-face with," says Mrs. Chapman of the understanding understanding she hopes to gain from meeting other parents. Parents dealing with the challenges of tuberous sclerosis sclerosis can contact Mrs. Chapman at 434-1838. If she's not in, leave a message. „ ,,, ■// Ji f / v .■ V I ***» <--1 r-l Welcomes B . WdW V, 1 I?lour.,, mm J "Hf lu « * " * mit w ml SJ With your purchase of } $35 or more of Christian Dior cosmetics Exclusively at Sears: With your purchase of $35 or more of Christian j Dior cosmetics. Miss Dior, Diorissimo or Diorella j fragrances, you will receive: • Rouge Collection Lipstick in "Fig" 3.5 g • Softening Cleansing Milk for Face and Eyes 50 ml., • Softening Lotion Alcohol-free 50 ml • Hydra-Star Moisture Creme 10 ml ■ ,v • Phenomen-A Double Retinol Wrinkle Treatment 3 sachets, 2 ml ea , • J'adore Eau de Parfum 1.2 ml Spray ;'fi Presented in an elegant cosmetic bag One bonus per customer. Offer valid from September 14 to Octob.rl.2000 or while quantities Iasi Correction In Sunday's This Week Calendar, an incorrect address address was given for the Oshawa Oshawa arid District Ostomy Association meeting on Wednesday, Sept. 20. The group meets at St. Paul's Presbyterian Church. 32 Wilson Rd. N„ between King and Bond streets in Oshawa, between 7:30 and 9:30 p.m.. For more information, information, call Alma at 728- 7207. This Week regrets the error. CLARINGT0N FIREFIGHTERS 2001 CALENDAR PRESENTS... Calendar Signing at Mickey Finn's in Oshawa, 1050 Simcoe St. N. (Beatrice & Simcoe) Thursday September 28/2000 9 pm to 11 pm Don't Miss This Opportunity To Support The Clarington Firefighters. dissociation of (Hospital 'Volunteers (BozmanzJille : % ANNUAL GREAT PUMPKIN HUNT AND FUN FAIR Saturday/ September 23rd. 9 a.m. to 4 p.m. (Rain Date: Sept. 24th) t ; At Watson Farms Hwy #2 West, Bowmanville Raffle: child's bike, sunglasses Walter Campbell painting OVER 50 EVENTS Art & Craft Vendors, i Simons Jumping Castle, Hydro-Bucket Ride, i; Sunshine the Clown, Teddy Bear Clinic Heljinger Wagon Rides, Children's Booths and much, much more. il: | m Displays and Demonstration by R it, Clarington Marshal Arts, R.C.M.R, ■ Fire Department Safety House, -o,,my Armored Car, Canine Unit, Antique Cars Am. A: MyjfffSUDDm STORM LIVE BAND"dfff Support Your Hospital Funds raised go towards the purchase of a punditilric crash carl far Lakcliidgc Health llowntanvillc, All Halenda's stores have meat cutters on location Owe will gladly custom cut tor you! Serving Durham Region with 6 locations including.. 4SI Simcoe Street South 723-160Z Tues.-Frl, H-6 Sat. 8-s Taunton Square Taunton/Rltion S7I-1446 Moil,-Wed. 0-6, Tlillri, 9.7 Frf. d-d. Sat, d-fc, Sun. 9-4 1300 KIiik St. Kait (Klntnuy Vingt Shepplnt CtnlrtM 45 *' 138 W Mon,-Wed. 9-7, 4i£m Tluirs. ti Frl. 9-d, Sal, d-fc, Sun. lo-j | ININ Dundai St. Kait Aero»» from KtmUlwood Pliu iK 434*8454 iV#Tu«»,U Wrd. 9-h Thun. N*7» Frl. N*7 Sat. 7*4», Sun. 10-f