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ci i economist sun stouflville tribune thursday oct 21 1999 15 people doctors can do little to help sevenyearold boy boy fights rare orphan disease by jennifer brown staff writer storm peschels ultimate dream in life is to swim with sharks in australia before he dies just thinking about the dan ger such an adventure would involve gives his mom georgia a shiver of fear but on second thought she knows it cant be any more life- threatening than the mysterious disease that attacks her seven- yearold sons body every day a disease that is slowly fusing his fingers and other joints together robbing him of his hearing his eyesight and the simple joy of riding his bike storm has multiple synosto sis syndrome a progressive disease which causes fusion of the bones it is an affliction referred to by doctors as a rare orphan disease a one of a kind its a disease that brings on debilitating pain for the little boy who doesnt understand why no orie can help him especially at night bedtime haunts parents georgia and norm peschel knowing their son will inevitably wake up in excruciating pain sometimes for three hours at a time expressing his pain in storm peschel words that slice like knives into his parents hearts he says things like he wants to die he says he doesnt know why god is doing this and why cant the doctors fix him he asks me to make it go away and of course i cant said georgia fighting back tears he even asked us if the doctors could take his legs off doctors at the toronto hospital for sick children have told the peschels there is little they can do to help storm his disease is so rare few know any thing about it but despite his pain storm musters the energy only a child can to play during the day he also attends grade 2 in a special hearing impaired program at st paul catholic elementary school in newmarket teachers and therapists thought storms inability to speak at age two was simply because he was a late bloomer now his parents know the dis ease was attacking him almost from birth after years of begging doctors to find a name for what was causing storm so much pain in may doctors at sick kids diag nosed him with multiple synos toses syndrome after comparing new xrays of storm to bone scans taken when he was younger he is the only one at sick kids with it said peschel but the diagnoses only brought more of the unknown sick kids has told the peschels to bring storm once a year to mon itor his disease but they insist mere is nothing they can do im terrified to go to sick kids because every time we go we have bad news said peschel im terrified because i think hes going to die and im afraid because they cant answer my question is he going to die and how painful is it going to be ifit is progressive that means the pain is going to be worse hot tubs pools hot tubs pools hot tubs hot tubs pools hot tubs pools hot tubs annual 4 day thursday october 21st to sunday 0ct00er 24th j m expectmore a good deal makes everyone happy blemished hot tubs onthe m 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