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AS-The Canadian Champion, Tuesday, February 20, 2007 ~usat1 487 Lauèrier A it. 0 M MNT 878-2881 Famil of iIIstricken boy fighting back Researchfund established in battie against rare disorder By Stephanie Thiessen CANADIAN CHAMPION STAFF Each day, Peter and Melissa Papaioannou grapple with tbeir fear of the unknown, trying to remnain bopeful despite odds ibat ofien seem to be work- ing againsi tbem. Is a cure anywhere in sigbî for their îhree-year-old son, Michael? its a question tbat can alîernaîely bring hope and discouragement. Two-and-a-balf years ago, Michael was diagnosed witb Lescb-Nyhan Disease, a rare disorder caused by a genetic mutation of the X chromosome. There are only "If we don't raise (the tbree other people living wiîh the dis- money), nobod will ad it case in Canada, (research) wilI just stop." and Michael is the ...................... youngest world-is PPASNU wide. A grueling ther- apy sehedule and the affect the dîsease bas on Michaef's cbîldbood eau take its toîl on bis parents, wbo live i Kitchener and run the Trail Eaiery in Campbellville. But tbey can't give up. lnstead, the Papaîoannous recenîly decided to stant a research fund thai would hopefully unlock somne of the mys- iery ihat surrounds the dîsease and maybe even fînd a cure. The Michael Carl Lesch-Nyhan Research Fund was stant cd last summer ai Toronios Hospital for Sick Childreu. 'Tbey're irying to fix the broken link,- Peter explaincd. But wiîh the hope the research brngs comnes a befty puice tag - almosi baîf a million dollars, of which thie Papaioauuous must fuud $ 100,000. Porîunaîely, tbe Milton commuuiîy bas been generous. Lasi year, a fundraising dinner was held ibai raised $43,000, allowing the research 10 stan. The previous year, a sîmilar eveut was held. Now, once agaîn, the couple is looking to members of the communiîy to lend their assistance. if we don't raise (the money), nobody will and it (the research) will jusi stop," Melissa said. This year's fundraising eveni wîll be held Saiurday wiîh proceeds going to, the research fund. The event will take place in the Gambrel Barn ai Country Heîiitage Park from 5 to 11 p.m. and will include dliminer ai 6 p.m. provided by Allisons Gourmet Caîening. Thercîll also be enieriainment, a bar and botb a sileni and a live auction. The concert portion of ithe evening will feature Canadian idol season one finalisi Billy Klippert, who recently released bis second album, Naked and The Simple Trutb. Also providing entertainmeni will be local musîcian James Sawyer, who released bis debut album lasi year - whicb includes a song writîen for Michael - as well as local crooner Kelly Maclutyre, who'll sing and emcee the nîghî. Tickets cosi $60 eacb and are tax deductible. GRAHAM PAINE / CANADIAN CHAMPION RARE SUFFERER: Melissa Papaioannou f lahes a big smEle while embracing son Michael, who's aff licted with an extremely rare disor- der known as Lesch-Nyhan Disease. The benelîrs of tbe research will extend beyond people witb Lesch-Nyhan Disease, Peter said, explamning itcould help any child with a neuro-muscular disease. Mehissa said she and Peter are well aware that the research bolds no guarantees. "The way 1 look at it, is wortb a shot," Melissa said, adding, -We always knew îî was a gamble, but ifs a gamble wortb îaking." Peter agreed. "Evert if it doesn'î work, ait leasi we tnied," he said. Cognitively Michael ES a normal littie boy He'u be stant- ing pre-sebool in September. But be can't vit up, walk on bis own or talk -be commu- nicates using a board wvitb picture symbols. He also expeniences one of tbe most hearî-breaking sy-mp- toms, a compulsion to self injure - in bis case, by biting bis hungers. "You tbink be bas a disability and you're dealing wiîb it, and then be starts Ebe self injuring and it blows you. oui of the waîer," Peter said. Witb aIl ihaîs going on, Micbaels an incredlibly happy lit- tic guy Melissa said. -l describe bîm as my angel. Hes the biggesî inspiration in my fle," she said. Simple activities - like eating popcorn together, Michael snuggled in ber lap - bave become îreasured moments, sbe said. Michael bas a file spant of 20 10 25 years, Peter said, and he and Melissa bave no intention of doing anytbîng less iban everyrbing they can for bim. "If we bave to figbt for 20 years to save bis fle, we will," Peter said. Tickets to tbe concert are available ait tbe Trail Eatery in Campbellville and Tbe Vacuum Store in town, or by callîng Peter or Melissa ai (519) 896-9784 or (905) 854-2505. Por more information, vîsît wwv.îbemicbaelpfund.com. Stephanic Thiessen can bc îechcd ai sthiesscn@0milloncana- dianchampion.«Arn W7\CQGECQ " Cogeco Cable Channel 14 Programming Schedule - Tuesday February 20 - Monday, February 26, 2007 fluly Local llevIbiofl 0a ~I Sep Plug:d I'EXTRA 8DOm-1 0m Puge XRA 8DRm 2 0a Plige Rl EX R T 8 <T, 0i gd Il EXTRA 8D<~ DEQe- ' 0pa Pluged I l EXRA 80aR< - 10 00an PIEOTI(Jln ETIRA 8DR O RDitiý PIie IlRD I A w w~w .coge co.ca T:0p -~ 6:ip1 PIgsIIIIII n EXTRA BDRtbl Ri iA TEE! 8î< 00; Pl,,î n' R TEDm ipi TVIR singeE P RElie1 AI EXTRA PiuIT Iý RýR 3'T TITI, F 00pr WE. EXR 6XR Tpe'l NIORTH HALTON STUDIO DRUve) 0r di 90V, HI E,! :0p 0an Pugd n XR T ý, R 0iDTnp , X1H ER91 %Qe 30DRA ET ggi DRA AIb Tl 200, 7î 30pr ROba F,11 ,I Iat, ARA uýý OM Sof i 9ROpR RSRXREEA cci Fln-Mdqi ugel l AXR RETR FRi,-MdhlP.qd [IRE 500 Laurier Avenue IRfix A TUeb120 Milton, ON L9T 4R3 1 pn-Md-gtPtge i XR 905-878-9306