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www.insideHALTON.com | OAKVILLE BEAVER | Thursday, September 5, 2013 | 6 Family is moving forward despite the pain by David Lea Oakville Beaver Staff Spotlight "Connected to your Community" O rganizers of a fundraising event intended to help an Oakville woman living in chronic pain said they need the public's help more than ever after thieves stole the money they had raised so far for her treatment. The event, which is being put together by the Improving the Life of Children (ILC) Foundation, will be held at Shakers Tap & Grill, 580 Kerr St., on Saturday, Sept. 14. The fundraiser will help the restaurant owner's wife Joanne Cerasani, 39, who has EhlersDanlos Syndrome (EDS) an inherited connective tissue disorder. Cerasani talked to the Oakville Beaver about her condition in a recent interview at Shakers. Cerasani is unable to walk without the aid of others and is helped to a table by her husband Tony Coelho. Tears well up in her eyes at times as she winces against an unseen pain. At one point, her shoulder spontaneously dislocates and her ngers cramp to the point where someone else must physically straighten them to relieve her agony. Her lower body is covered in bandages concealing 14 abscesses in her skin. This is all part of EDS, she said. "Living with EDS is something I wouldn't wish on my worst enemy," said Cerasani. "You never know what to expect with EDS on any given day. You could be talking and walking one day and the next day be drifting in and out of consciousness or being very incoherent. There's excruciating pain, a lot of dislocations. With my complications, I can't eat; I can't swallow properly. I get very bad headaches, joint pain, spinal pain. It hurts to even have my head sit on my shoulders. It's tough... It's really, really tough to live with." Cerasani said some of these symptoms date to when she was a child, but the really debilitating ones did not show themselves until she gave birth to her son Dylan about 11 years ago. The disorder, she said, impacts virtually every aspect of her life. She must eat through a feeding tube and has never been able to pick up her son or anything else heavier than 10 pounds (4.5 kilograms). She said the disorder has robbed her of any kind of independence as she must ask for help to use the bathroom or even get out of bed. It was pointed out that Shakers was pur- A fundraiser will be held Sept. 14 Shakers Tap & Grill so Joanne Cerasani (centre) who suffers from Ehlers­Danlos Syndrome (EDS) can receive treatment in the U.S. From left, Tony Coelho (owner of Shakers/Cerasani's husband), Cerasani and their son Dylan. photo by David Lea ­ Oakville Beaver (Follow on Twitter @halton_photog) chased with the intention Cerasani would run the kitchen, however, the onset of her disorder quickly ended that dream. The ordeal has also been a dif cult one for Cerasani's family with Coelho stating it is hard for him to see his wife in pain and not able to do anything about it. Sandy Smeenk, executive director of the ILC Foundation, said because EDS is so rare, doctors in Canada often misdiagnose it and don't know how to treat it when a case is con rmed. Coelho said his efforts to get treatment for his wife in Canada have hit a road block with the couple visiting Toronto Western, McMaster, Women's College and other hospitals to no avail. "I feel the only thing they've done is medicate her for pain," said Coelho. "They really haven't treated her for the disease or help her get to a better state of life." For this reason, Cerasani is looking to a specialist in the U.S. for help. Smeenk described this specialist, who operates out of Doctor's Community Hospital in Baltimore, Maryland, as "unique" in his treatment of EDS, stating he has succeeded in performing surgeries that offer EDS patients some relief. The problem is, Cerasani says she can't afford the vast costs to go to the Maryland centre for treatment and this is why ILC has decided to hold a fundraiser. The event, which will feature a variety of musical performers as well as a visit from HGTV TV star Mike Holmes and his crew, attracted considerable attention with Coelho selling around 200 tickets and raising $4,000 over eight weeks. Then came the Saturday, Aug. 25 break-in at Shakers, which not only saw thieves break into an ATM on the premises, but also make off with all the fundraiser money. "I was extremely shocked," said Coelho. "When I walked in my rst thought was `the fundraiser money.' We also lost vouchers and gift certi cates that people donated. There was so much in that envelope related to the fundraiser." Despite what Coelho is calling a `stumbling block', the fundraiser is moving forward and will runs from 2-8 p.m. Tickets cost $20. Each ticket purchased will be entered into a draw to win one of several door prizes including a three-day trip to Las Vegas. Tom Barlow, Gord Depp, Marshal Dane, Liquid Courage, Michael Zane, Dale Roosien, Fresh, Corey Leuck, Pat Hewitt, Lou Pinto and James Clark Jones will provide the evening's music. When all is said and done, Cerasani has measured expectations and hopes concerning what will happen if she can actually seek treatment for her condition in Maryland. "I'm praying for a little bit of relief. Anything. Just something to change -- something to be different. Something to make life a little bit easier for me and for my family whether it be I can actually eat again, which would be a huge miracle, or maybe get off medication and be a little less dependent on pain control," said Cerasani. "I really don't know. I guess I am just hoping for a chance and whatever that brings." For more information about the fundraiser or to make a donation, call 905-691-5195 or email support@theilcfoundation.org. Those who have purchased tickets prior to the break-in on Aug. 25 are asked to bring this to the attention of Shakers staff when they arrive for the Sept. 14 event so they can be issued a new ticket that will allow them to participate in the door prize draw. NEIL OLIVER Vice ­President and Group Publisher DAVID HARVEY Regional General Manager JILL DAVIS Halton Region Editor in Chief Volume 51 | Number 106 467 Speers Road, Oakville ON (905) 845-3824 Oakville Beaver is a member of the Ontario Press Council. The council is located at 80 Gould St., Suite 206, Toronto, Ont., M5B 2M7. Phone (416) 340-1981. Advertising is accepted on the condition that, in the event of a typographical error, that portion of advertising space occupied by the erroneous item, together with a reasonable allowance for signature, will not be charged for, but the balance of the advertisement will be paid for at the applicable rate. The publisher reserves the right to categorize advertisements or decline. Editorial and advertising content of the Oakville Beaver is protected by copyright. Unauthorized use is prohibited. Editorial Department: (905) 632-0588 Advertising Department (905) 845-3824 Classi ed Advertising: (905) 632-4444 Circulation: 5300 Harvester Rd., Burlington (905) 631-6095 DANIEL BAIRD Director of Advertising ANGELA BLACKBURN Managing Editor