The ILC Foundation (Improving the Life of Children)



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| |The Chronic Pain Connector | |

| |(A Biennial newsletter for families of children, adolescents and | |

| |young adults living with chronic pain) | |

|Volume 1, No. 02/13 | |

| |Fall 2013 |

| |Bi-Annual Newsletter |

|Welcome to the second edition of The Chronic Pain Connector. Thanks for being interested in what we have to say. To those of you that provided |

|feedback and your endorsement comments, Thank you! Keep sending us your suggestions and feedback: office@ |

|Table of Contents |

|Events |

|E-Connect with Us |

|In the World of Chronic Pain News |

|Research |

|ILC in the News |

|Community Events |

|In Remembrance |

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|ILC PEER SUPPORT CHAPTER EVENT: |

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|Families joined ILC Peer Support Event on Saturday, May 25th from 1:00 to 4:30 pm. – A full schedule for Parent-to-Parent, Tweens'n Teens+, |

|and finishing off the afternoon with a consult visit with Digisplint Inc.  |

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|An inspiring afternoon of camaraderie and sharing. Location: On the water’s edge at the foot of Navy Street in the Oakville Museum (main floor |

|meeting rooms and gardens), 8 Navy St, Oakville, ON, L6J 2Y5. |

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|Tanya Foyle hosts fundraising for Ehlers-Danlos Syndrome (EDS): |

|• Third party fundraiser for Oakville family living with Ehlers-Danlos Syndrome (EDS), Saturday, Sept. 14, Shakers Tap and Grill from 1 pm to 1 am, |

|including Mike Holmes and his crew, Mike Shotton, Gord Depp from the Spoons, Holly Cole, Platinum Blonde with fantastic help from Oakville’s own |

|AUDIOMAN and more. The ILC was thrilled to be included as part recipient of funds raised in this event with a donation of just under $2,000.00. |

|Funds will be used to support the ILC’s Halton and Peel Chapter Peer Support activities. A heartfelt Thank you to Tanya and all the volunteers she |

|rallied for an amazing event! |

|Peer Support |

|• ILC Halton Region and Friends Family Peer Support event, Saturday, Sept. 21st. – A group of teens and young adults and their parents connecting on |

|the importance of reaching out to not feel alone in a comfortable setting after adjusting to the first two weeks of school. Families wishing to |

|participate in the Halton/Peel location events, email office@. Stay tuned for other locations and exciting news about |

|interactive therapies during peer support. |

|A Taste of Mindfulness Charity Lecture: Oakville |

|• Thank you to Robyn at Creating Space Yoga Studio and Dr. Stephane Treyvaud and the attendees of A Taste of Mindfulness Charitable Lecture for the |

|wonderful support of ILC’s charitable programs with the donation of $1,560.00 on September 28th. For more information about other events like this |

|and programs offered, visit: mindful.ca. |

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|Christopher’s Challenge and a Mom with heart – Niagara Falls |

|Let's help Christopher Raise Awareness about EDS! So that more is learned about this disease, donate to support the ILC Research initiative |

|at . Thank you! |

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|Christopher's Challenge with Ehlers-Danlos |

|After many many months, Christopher has been diagnosed with Ehlers-Danlos!! We are hoping to make this syndrome aware!! |

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|Scientific Workshop – October 4th and 5th in Oakville: |

|• The ILC Foundation hosted a scientific workshop as a discussion for leaders to Bridge Gaps: Expert Leadership and Vision to Establish Best Care |

|Practice Guidelines for a broad group of complex chronic pain diseases - Where Quality of Life Meets The Art and Science of Medicine. |

|The ILC organized and presented the Difficult to Diagnose Disease Program (DDD Program) as a method to bridging gaps in best practices. Based on the|

|experience in providing peer support to a wide population that suffers tremendously with Ehlers-Danlos Syndrome (EDS), the DDD Program initially is |

|focused on this connective tissue disorder. Twenty-six multidisciplinary medical and allied health professionals attended from Halton, Hamilton, |

|London, the GTA, Quebec and the United States to begin the process. Stay tuned for a full report on outcomes. |

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|Thank you! Erika Crawford & Family Pay It Forward with Rosehill Liquidation – October 12th in Brantford County: |

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|Third party awareness and fundraising event – Saturday, November 2nd in Oakville: |

|• Oakville’s Largest Rock’n Roll Party celebrates its 10th year of third party fundraising, supporting three families in the Halton Region living |

|with Ehlers-Danlos Syndrome with high costs to healthcare; and the ILC. |

|National Pain Awareness Week 2013 – Leading up to and during November 2nd – 9th |

|October 28th – The ILC present A Unique Perspective of Chronic Pain to Halton Health Sciences nursing staff on chronic pain in |

|children, adolescents and young adults. |

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|You can find us on Facebook: |

| or email us at |

|info@ or (416) 822-3494. |

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|Please share you success stories here. Whether you are a physician, researcher, individual coping with pain, help raise hope to know that |

|better care can and will happen. Email us at info@. Thank you! |

|Pediatric pain |

|Canada is a leader in pain research. So why are kids suffering? |

|by Elizabeth MacCallum on Wednesday, January 30, 2013 |

|VIEW IN CLEAN READING MODE » |

|WHAT IS THIS ?   |

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|Michelle Del Guercio/Science Source |

|Pippa is a big girl now, almost 4, so she’s very good on the swing. “Higher! Higher!” she squealed and James McKee, her father, obliged |

|with delight. Then it happened. The nightmare. Pippa sailed through the air like a bird and crash-landed with her right leg underneath her.|

|To avoid hours in the notoriously slow waiting room at the Hospital for Sick Children’s emergency ward in Toronto, McGee and his wife, Amy |

|Nugent, took Pippa to a general hospital nearby. Waiting there more than five hours for an ambulance—because children with serious broken |

|bones in Toronto go to Sick Kids—Pippa would doze off briefly, only to wake screaming. No one was around at the ER desk who could respond |

|to McKee’s pleas for more appropriate medication for his daughter. When the family arrived at Sick Kids, Pippa was immediately made |

|comfortable with the completely necessary pharmacological brew, as she waited until orthopaedic surgeons pinned the fracture in her femur |

|later that day in the operating room. |

|Pippa was actually extremely lucky. She ended up in one of the best pediatric pain centres in the world. Canada has only seven hospitals |

|with children’s-pain departments to serve the entire country; Manitoba, P.E.I., Newfoundland and the North have none. Despite the fact that|

|this country is one of the world leaders in pediatric pain research, many children in Canada do not live within access of proper pain care.|

|The groundbreaking pediatric pain management program at the renowned IWK Health Centre in Halifax flourishes, its brilliant research |

|included. But if you live in Cape Breton and have a child with chronic pain—regular pain that continues for months and often years—every |

|appointment can mean a long drive to the hospital, overnight stays, time off work and missed school days. These hospital-based clinics |

|provide complete interdisciplinary care at no cost to the family. If the child sees local physio- or massage therapistsoutside a hospital |

|setting instead, each professional must be paid directly, unless the family has a plan through work. That usually covers only a few |

|appointments, nothing like the costs of regular visits for the long haul. Most families are shocked to discover just how inadequate pain |

|care for children can be. |

|For almost a century, as professional doctors took over from midwives and female family members in the birthing business, a myth was born |

|that newborns and premature babies don’t feel or remember pain. In the early 1980s, the anaesthesiologist for a premature infant, Jeffrey |

|Lawson, didn’t believe he would feel any pain during open-heart surgery. She provided no pain relief during surgery, just Pavulon, a drug |

|that left him unable to move, but totally conscious. The only good news in this horror story that ended with Jeffrey’s death a few weeks |

|later is that his mother, Jill Lawson, went on a public rampage when she learned the facts of the surgery, and went so far as to get her |

|story published in the medical journal Birth in 1986. The anaesthesiologist “seemed sincerely puzzled as to why I was concerned,” Lawson |

|wrote. A neonatologist explained to her that “babies, unlike adults, don’t go into shock no matter how much agony they suffer.” Lawson |

|argued in her article that anaesthesiologists took advantage of this, coupled with the patient’s inability to complain. “I’m convinced that|

|Jeffrey was paralyzed for the convenience of the surgeon. Once paralyzed, he couldn’t distress the operating team by demonstrating his |

|pain, so they didn’t give it any further thought.” Her story shocked families and professionals alike and significantly vitalized the |

|current wave of research on pain in babies and children. |

|The most delicate premature babies endure up to 10 painful procedures a day, often while lying constrained in their incubators. Ruth |

|Grunau, a professor of neonatology at the University of British Columbia, has found that the more painful procedures a child endures, the |

|more brain-development and behaviour problems it suffers. Babies soon behave like adults who have chronic pain, and develop an infant form |

|of depression. The problem is that regular opioids can be damaging to infants, and topical anaesthetics don’t always work. |

|Fortunately, not all solutions involve medication. Celeste Johnston, a nurse specializing in neonatal pain at IWK and a professor emeritus |

|at McGill University, studies “kangaroo care,” a tactic that had mothers keep their premature babies snuggled against them, skin to skin. |

|The strategy was first developed in the ’70s in Colombia, which had a shortage of incubators. Even with children born at as little as 32 |

|weeks’ gestation, mortality rates fell. Johnston’s research showed that premature and term infants held skin to skin, much like a baby |

|kangaroo in its mother’s pouch, show significantly less pain throughout tests and injections. Johnston and her colleagues are currently |

|assessing 16 studies from around the world for theCochrane Review, the respected medical research journal, proving the benefits of kangaroo|

|care. |

|Johnston doesn’t forget fathers’ contributions to pain relief, either. In an interview, she describes watching a film clip of a father |

|never breaking eye contact with his little boy, who was in the process of being anaesthetized. He regaled his son with stories about their |

|dog and what would happen if it were let loose in the hospital. The child went under happy and relaxed. |

|Dr. Christine Chambers, who holds the Canada Research Chair in pain and child health and is a professor of pediatrics and psychology at |

|Dalhousie University in Halifax, was part of a group that generated clinical guidelines for parental behaviour when children experience |

|mild discomfort or severe pain. Despite the instinctive tendency to empathize in rising vocal tones, her research shows that this actually |

|makes the child feel worse. Chambers and her colleagues teach parents to distract a child, even during regular vaccinations. What affects |

|the child’s attitude to future medical procedures isn’t so much the degree of pain a child reports feeling at the time, as it is his memory|

|of the event. If the parents are positive and confident—without actually lying—the child will be less fearful and have less pain. |

|Nurse Cathy Lewis in Calgary has learned all about the power of distraction on the job. For one or two days a week, she gives vaccinations.|

|Distressed by the unhappiness generated by this straightforward public health work, she thought back to a film about distraction techniques|

|and clowning. Now, with her invisible magic gloves and her captivating routine, kids often don’t realize they have just had a shot—or even |

|two. She’s proud when four-month-old babies laugh after inoculations. |

|At a surprisingly young age, children can help themselves, too. Celeste Johnson tells the horrifying story of a four-year-old girl who |

|reported everything that had gone on in a procedure when she was so deeply sedated, staff thought she was unconscious. Because of this |

|experience, the little girl hated everything about hospitals. Eventually, she came up with her own way of calming herself down. She worked |

|out that her very own purple boots gave her magic protection. If she wore them to the hospital and kept them on always, she could be |

|invincible. That was the end of hysterical, tearful arrivals. All it took was her imagination and understanding medical staff. |

|More concrete solutions will take some political will, and financial resources. In an interview, Dr. MaryLynch, president of the Canadian |

|Pain Society, lamented the fact that only two per cent of children with chronic pain in Canada get the care they need, and argued that will|

|never improve without a national strategy. “There is a perfect parallel in the Canadian strategy for cancer control, based on a 2006 paper |

|that summarized a five-year plan, substantially financed by the government.” |

|Chronic pain costs Canada $60 billion every year, she says. Those resources can be better deployed. Last spring, Lynch, along with other |

|experts from the Canadian Pain Coalition, blitzed Parliament Hill during the first national pain summit. Rather than emerging with a |

|national plan, they failed to have even one conversation with a Conservative politician. “This federal government has no interest at all in|

|national strategies,” said Lynch. “They could call a task force to put [one in]. That’s what we asked for at the summit. We have a |

|blueprint and would be happy to help them.” |

|As Lynch sees it, pain is about much more than dollars. “If children don’t receive appropriate care, they miss out on formative years, and |

|pain can wreck their entire lives. That has a major cost to the child, their family and our whole of society.” Any child can tell you: pain|

|really hurts. |

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|In response to the following article below here “Doctors warned to look out for parent-fabricated illness in kids” based on our experience |

|with three families over our pilot year of providing support – “The ILC Foundation recognizes the need to protect children from the abuse |

|at the hands of parents causing a parent-fabricated illness. However, we are also acutely aware of the tragedies inflicted to parents, |

|whose children suffer from a difficult-to-diagnose chronic pain illness such as connective tissue disorder Ehlers Danlos Syndrome (EDS) or |

|Reflex Sympathetic Dystrophy (RSD), who are being falsely accused of child abuse when they seek help, and then suffer the consequence of |

|having their children removed from their care. We therefore believe that it is imperative to raise awareness of this most difficult of |

|differential diagnoses between parent-fabricated and difficult-to-diagnose illness, and develop rigorous guidelines for best practices in |

|first distinguishing the two conditions and then appropriately treat and care for the patients involved.” |

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|Doctors warned to look out for parent-fabricated illness in kids |

|- Ubelacker, The Canadian |

|Press Published Monday, August 26, 2013 |

|TORONTO -- Doctors need to be alert for signs of a form of abuse in which a parent fabricates illness in a child and exposes them to |

|unnecessary and potentially harmful tests and treatments, says the American Academy of Pediatrics. |

|Because it is relatively rare, caregiver-fabricated illness in a child is often unrecognized by health professionals, said Dr. Harriet |

|MacMillan, who co-authored a report on the subject for the AAP, which appears in Monday's issue of the journal Pediatrics. |

|"In the child, it's a form of maltreatment; in the person who is committing it, it is considered a psychiatric disorder," said MacMillan, a|

|pediatrician and child psychiatrist at McMaster University's Children's Hospital. |

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|Dr. Harriet MacMillan, pediatrician and psychiatrist at McMaster University is shown in this undated handout photo. Doctors need to be |

|alert for signs of a form of abuse in which a parent fabricates illness in a child and exposes them to unnecessary and potentially harmful |

|tests and treatments, says the American Academy of Pediatrics. (THE CANADIAN PRESS/HO) "One example would be where a parent is reporting |

|that the child has certain symptoms that the child doesn't have," she said from Hamilton. "The parent will say, 'My child has terrible |

|abdominal pain.' So it begins with a set of X-rays, then other (diagnostic) procedures or potentially even exploratory surgery." MacMillan|

|and other members of the AAP's Committee on Child Abuse and Neglect said caregiver-fabricated illness in a child has been known since the |

|1980s as Munchausen syndrome by proxy. The latest volume of the Diagnostic and Statistical Manual of mental disorders, the bible of |

|psychiatric diagnoses, calls it "factitious disorder imposed on another." The syndrome name derives from Baron von Munchausen, an |

|18th-century German aristocrat who purportedly told many fantastic stories about himself. In the early 1950s, people who fabricated disease|

|symptoms that led to self-harm were described as having Munchausen's syndrome. Inventing symptoms in others came to be known as |

|Munchausen's by proxy. "It's been referred to with different names and our committee felt it was important to refer to it as |

|caregiver-fabricated illness in a child because it really puts the emphasis on the child, as with other types of maltreatment," MacMillan |

|said. Caregiver-contrived illness is relatively rare -- it's estimated to occur in 0.5 to two per 100,000 children -- but its effects can |

|be severe. An estimated six to nine per cent of children exposed to this form of abuse end up dying as a result, and about the same |

|proportion are left with long-term disability or permanent injury. "When health-care providers are seeing children with illnesses that are|

|not explained and result in multiple medical procedures, they need to be alert to this possibility," said MacMillan, cautioning that there |

|is no typical presentation. A child might show up with anything from bleeding or seizures to a urinary tract infection or attention |

|deficit hyperactivity disorder, the authors say. MacMillan, who is part of a health-care team dealing with family violence and |

|interventions aimed at preventing child abuse or neglect, said made-up symptoms can be physical or psychological. Over the years, she's |

|seen cases of psychiatric symptoms being fabricated by a parent, "anything from 'My child is behaving in a way that makes me question |

|autism' to 'My child keeps trying to hurt herself."' Children can end up being prescribed unnecessary drugs -- antidepressants, even |

|antipsychotics -- as a result, she said. Dr. Marc Feldman, a psychiatrist at the University of Alabama and an internationally recognized |

|expert in Munchausen's and other forms of medical deception, said parents behind this kind of abuse are typically seeking emotional |

|gratification, but at the cost of the child's well-being. "And usually that comes in the form of seeking attention and sympathy," he said |

|from Tuscaloosa, Ala. "So they present themselves as the caregivers of terribly ill children, whose illnesses are defying diagnosis. And |

|predictably, they get a lot of care and concern from immediate family as well as the community." Feldman, author of "Playing Sick," said |

|many of these parents are dissatisfied with how their own lives have turned out and feel out of control. Successfully manipulating the |

|beliefs of "high-status professionals like doctors allows them to feel once again in control." |

|One of the most common means of "proving" their assertions to health providers is to cause their child to stop breathing. "I actually have|

|videotapes of several perpetrators, male and female, suffocating the child when they think they're not being observed," he said. "In one |

|case, the father literally positions his entire body over the infant's head with the infant's face pressed into the mattress and he stays |

|in that position for 70 seconds, and then gets up when a nurse enters the room and the child is unconscious but alive." While babies and |

|toddlers are often the victims, older children and even caregiver-dependent disabled adults can also be the subjects of sham symptoms, |

|Feldman said. One paper in the medical literature suggests older siblings may also have been previous targets, and in about 25 per cent of|

|cases, those children died as a result. |

|"It may be more lethal than just about any other form of abuse," said Feldman, noting that children can become Munchausen's patients |

|themselves as adults or end up avoiding medically necessary treatment due to post-traumatic stress disorder. "They want nothing to do with|

|anything that reminds them about the victimization they experienced earlier in life." |

|MacMillan said doctors who are suspicious about the credibility of purported symptoms need to conduct a careful medical history and |

|physical examination, and speak to health providers in other settings to see if they have previously seen the child for similar complaints.|

|"My aim is not, nor is it of the committee, to suggest that this is a really common problem. It's not at all," she said. "Nonetheless, as |

|with any condition that is so associated with impairment for a child, we think it's important for health-care providers to know about it." |

|Read more:  |

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|Sarah-Jill does an amazing job of explaining why so many families travel to the United States for care in her video that expresses the |

|beautiful essence of who she is...ILC is excited to be facilitating the education to bring this expertise to Canada through its Difficult |

|to Diagnose Disease Program. Enjoy and please be inspired...  |

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|Sarah's Race to Lose the Neck Brace - Fighting Ehlers-Danlos Syndrome |

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| is a positive place to visit and connect in a way that will inspire! |

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|21-Day+ Rehabilitation Program |

|Burlington, Ontario - October 1, 2011: The ILC hosted a Workshop that was attended by Canada’s leading chronic pain experts to organize |

|and medically vet a 21-Day+ Rehabilitation Program. While McMaster Children’s Hospital has committed interest to the Pilot the Program, |

|funding for this clinical research opportunity has not been secured yet. |

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|The ILC’s long term strategic plan involves a community based integrated approach to health care for this at risk population. We believe |

|that an in-house day 21-Day+ Rehabilitation Program can bridge gaps in education and awareness through program delivery by medical students|

|conducting grand rounds to learn the invisibilities of chronic pain. We also have learned that the greatest impact of learning can be |

|realized when Deans and Professors write questions in to exams to weight the importance of what is being taught in the lecture hall and the|

|clinical setting and that this can prove a great outcome to bridging gaps in the understanding of chronic pain illness for future front |

|line care providers. |

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|The ILC is continuously building its funding capacity to meet these targets and hopes that co-funding grants will enable participation |

|participation at the medical level. |

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|The ILC Difficult to Diagnose Disease Program Scientific Workshop Signature Sponsor: The Hawkins Family |

|The ILC facilitated and funded a scientific workshop on October 4th and 5th, 2013 as a collaborative among leading international experts to|

|set the parameters for the DDD Program. The outcome of this initiative will be of international significance to how health care is |

|provided to an at risk population that continuously fall between the cracks of care and those that represent the 1% of high cost to health |

|care utilizing 50% of health care budgets with frequent hospital visits and specialist appointments. |

|Endorsements: |

|The role of the ILC foundation as a link between the patient, families, policy makers and the health care team is crucial in the |

|development of the process. Dr. Juan Camilo Guzman, M.D. MSc, FRCPC, General Internal Medicine, Syncope and Autonomic Disorders, Health |

|Research Methodology |

|The program [ILC Difficult to Diagnose Disease Program] and the scheduled speakers for the Scientific Workshop are outstanding and I would |

|dearly love to take part because the topics are ones that rarely make their way onto scientific programs. Peter Vadas MD PhD FRCPC, |

|Director, Division of Allergy and Clinical Immunology, St. Michael's Hospital. |

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|McMaster Children’s Hospital |

|McMaster Children's Hospital is part of Hamilton Health Sciences' family of hospitals.  It is also home to the McMaster Child Health |

|Research Institute (MCHRI) led by McMaster Children's Hospital and McMaster University,  Faculty of Health Sciences in conjunction with |

|many key research partners. |

|McMaster Children's Hospital recognizes that children's health needs are unique and that the development of optimum health in childhood can|

|prevent other conditions of poor health later in life. |

|MacKids Award of Excellence: On Monday, August 19th, the ILC Foundation (“ILC”) presented pediatric neurosurgeon, Dr. Benedicto Baronia, |

|the ILC Foundation Award of Excellence in Care for his compassion, dedication and care of young people living with challenging symptoms of |

|complex chronic pain diseases that are difficult to diagnose, treat and care for. “Dr. Baronia is the kind of doctor that every child |

|should meet when suffering with chronic pain.” His approach is one of gentle kindness where his patients have reported him saying, “If I |

|had a crystal ball, it would not be able to tell me the many things that are wrong, but I promise that I won’t let you go until we figure |

|things out to make things at least better.”  |

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|The ILC is presenting this award to Dr. Baronia, prior to his leaving McMaster Children’s Hospital, to mark his valued contribution to the |

|ILC families that live with complex chronic pain and specifically those with Ehlers-Danlos Syndrome (EDS) where he tirelessly worked to |

|figure things out. His participation in the ILC’s integrated peer support network enabled collaborations with a neurosurgeon in the United |

|States that has developed expertise in this connective tissue disorder. Based on the collaboration, Dr. Baronia was able to learn about the|

|clinical presentations of tethered cord in two of his EDS patients, where he subsequently performed surgery to release the tethered cord, |

|alleviating the chronic leg and foot pain one of his patients experienced for eight years. The ILC are sad to know that Dr. Baronia will be|

|leaving McMaster as he has accepted a position at a medical center in the United States. There gain will be our loss. Sandy Smeenk |

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|IWK Health Centre – Halifax serving Maritime provinces |

|The Pediatric Complex Pain Clinic treats out-patients with chronic pain. Assessments and treatment are provided by a team including |

|physicians, a clinical nurse specialist, a clinical psychologist, and a physiotherapist. Treatment often includes a combination of physical|

|treatment and exercise, cognitive-behavioural techniques such as relaxation and imagery, and medications. The child and family are |

|important members of the pain management team. |

|Dr. Allen Finley is one of ILC's medical advisory board members who leads in the area of clinical research, treatment and care of childhood|

|and teenage chronic pain illness. |

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|SUCCESS STORIES - DR. ALLEN FINLEY, M.D. |

|Finding his Voice |

|Only a few times since he met Caitlyn, has Dr. Allen Finley shared her story. His friends know about her, and a few colleagues. But his |

|lectures, keynote speeches, conversations with peers, residents and even with patients, often lack any mention of her. He rarely tells the |

|story about the four year-old cancer patient who changed his life early on in his career. Caitlyn taught Finley about pain. He wasn't even |

|considering pediatric pain as a field of focus in his residency, but watching this little girl suffer, without much support from the |

|medical system, and ultimately die, made him realize something must change. When he tells the story, you can feel his passion for helping |

|children, and you begin to understand the dire need to better treat children's pain. |

|Even in his public role of a pediatric pain advocate, Finley doesn't focus on Caitlyn; instead, he speaks as many experts do in the |

|language of research and academia. |

|His first attempt to write an opinion editorial at home in Canada for his local paper on children's pain was muddled. In his words, the |

|piece was written "in an academic style, using phrases that were factual, but cautious, non-emotional and fairly flat." |

|His natural instinct to talk like an academic carried over into the Mayday Pain & Society Fellowship workshop in 2005. Interview after |

|interview lacked life, energy and passion. Finally, at a coffee break at the workshop, one trainer cornered him. "Tell me, Allen, why do |

|you do what you do?" The story of Caitlyn came to life in Finley's words. "That's it!" the trainer said. "You've found your voice." Finley |

|came to realize the power of telling stories; how the children in the stories made the problem real. Finley rewrote his op-ed, and the lead|

|was his experience treating Caitlyn. |

|Instead of running in his local paper, Finley's op-ed appeared in the leading nationalnewspaper in Canada, The Globe & Mail. |

|And as is common, his op-ed led to an opportunity for further exposure, in this case a phone call from the producers of a national radio |

|program of the Canadian Broadcasting Corporation (CBC) asking Finley to do an in-depth interview about pediatric pain. It would feature |

|real patients to bring the story to life. Reaching millions of homes, the program is a great forum to raise awareness about children and |

|pain. |

|Finley is now sharing not only his expertise about pediatric pain, but his powerful message and voice. From his op-ed: "Imagine being the |

|parent of a child with cancer who won't even let you hug her because it hurts too much. Imagine being a teenager with chronic pain who |

|nobody believes. Imagine being too young to find the words to say when it hurts." |

|G. Allen Finley, M.D., 2005/06 Mayday Fellow, is professor of anesthesia and psychology at Dalhousie University, medical director of |

|pediatric pain management at the IWK Health Centre in Halifax, and president of the International Association for the Study of Pain Special|

|Interest Group on Pain in Childhood. |

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|Alberta Children's Hospital foundation receives $15 million donation to create the Vi Riddell Children's Pain and Rehabilitation Centre – |

|Click to read full story |

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|pain-and-rehabilitation-centre |

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|Alberta Health Services – Alberta’s Children’s Hospital |

|The Paediatric and Adolescent Complex Pain Service treats children aged 0 - 17 who experience chronic, complex, or difficult to manage |

|pain. |

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|Alberta Health Services – Stollery Children’s Hospital, Edmonton |

|Meets the needs of children and adolescents with chronic pain and their families in an environment that integrates excellence in the |

|delivery of care, education and research. Treats and cares for children 17 years and under who are experiencing chronic, difficult to |

|manage pain. |

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|Montreal Children’s Hospital |

|Evaluates and treats chronic pain in children in a multidisciplinary way. The core team comprises a physician, psychologist, |

|physiotherapist and clinical nurse specialist. Medical and surgical specialists and members of Social Services are consulted when needed. |

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|Children’s Hospital of Eastern Ontario – Ottawa |

|CHEO also provides a Chronic Pain Service (CPS) for patients in hospital and outpatients. For outpatients, clinic visits are intended to |

|identify, treat and follow up children with long-standing or complex pain. |

|The Hospital for Sick Children – Toronto |

|The Chronic Pain Program at The Hospital for Sick Children is a specialized clinical service for children and adolescents with chronic |

|pain. |

|[pic] |

| [pic] |

|Jun 26, 2013  |    |

|Nelson teacher awarded for supportive efforts |

|[pic] |

|ngel |

|Hannah Yoon/Metroland Media Group pain and fatigue. |

|Burlington Post |

|ByIan Holroyd |

|To some, she is not just a special education resource teacher; she’s a guardian angel. |

|Nelson High School’s Wendy Malloch is known for going above and beyond for her students, particularly Emma Steckner, 16, who suffers from a|

|rare illness, which causes her chronic pain and fatigue. |

|“I don’t think I’d be able to be (in school) without the support that she gives,” said Steckner, who was not feeling well when she spoke to|

|the Post, her voice weak over the phone. “She’s really nice. She’s just lovely.” |

|On June 19, Malloch was presented with the ILC (Improving the Life of Children) Foundation’s 2013 Award of Excellence in recognition of her|

|efforts to enable students like Steckner to attend school, achieve in her courses and succeed overall. |

|Mary Steckner, Emma’s mom, said knowing that Malloch is at the school with her daughter is reassuring. |

|“It’s been wonderful for Emma to have somebody that she can go to for any support and for me to know that Emma’s got the support that she |

|needs and there’s somebody who really takes the time to listen and be creative about solutions,” she said. |

|According to Mary, her daughter began displaying symptoms around four years ago. It took doctors three years to come up with an |

|explanation. |

|Steckner was diagnosed with Ehlers-Danlos Syndrome (EDS), a connective tissue (skin, joints, blood vessel walls) disorder that causes her |

|severe chronic pain and fatigue. She also has a condition related to EDS calledDysautonomia, which means her body struggles to regulate |

|basic body functions, such as blood pressure, heart rate, digestion and body temperature. |

|Her illness has made it difficult for Steckner, currently in Grade 11, to attend school on a regular basis. |

|In order to accommodate her student, Malloch has been known to go to Steckner’s home for one-on-one instruction as well as collaborate with|

|the teen online. She has been credited with advocating for Steckner within the school and liaising for her with her teachers. |

|Malloch, 45, who has been teaching for 15 years, five years in special ed., said she is a little embarrassed by the public acknowledgment |

|she has received from the award. |

|“You’re always doing your best for students but it’s really nice to sometimes get that formal recognition especially because I am in |

|special education, so much of what you do is kind of behind the scenes and underwater,” she said. |

|“Every kid is a bit of a puzzle and they tend to end up in special education because the regular system doesn’t work for them for one |

|reason or another. Figuring out the ways to make it work for them, I love that matchingpieces to the puzzle side of it,” Malloch continued.|

|“I love that creative, outside the box, trying until you find something that really works and being able to work with the actual student.” |

|When Steckner is well enough to attend classes, her unique needs have also been met by Nelson High School, which has taken steps to make |

|her pain more manageable. |

|Mary said the school has provided her daughter with a quiet place to retreat to when she needs to rest, allowing Emma to remain in school |

|longer and has provided her with more comfortable seating, which allows her to stay in class for the duration of her lessons. |

|Sandy Smeenk, Executive Director of the ILC Foundation, said Malloch’s contribution to Steckner’s education is worthy of the organizations |

|first ever excellence award. |

|“We’ve had more cases that went the other way, where there was no support,” said Smeenk. “When we learned about Emma and the tremendous |

|support that she received, it struck a chord and it needed to be recognized and honoured because Wendy went way above the call of duty and |

|the school supported her in doing that and so did the school board.” |

|The ILC Foundation’s mission is to raise awareness about children with chronic pain as well as advocate for them and offer peer support. |

|The organization is currently working towards funding clinical research to develop best care practices. |

|Smeenk said the foundation is hoping to continue the awards next year but expand it to recognize numerous individuals and schools that show|

|exemplary support to students with chronic pain. |

| |

|[pic] |

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|Aug 21, 2013  |    |

|ILC tries to fill the gap in youth chronic pain cases |

|[pic]Submitted photo Mills with Amber, a participant in ILC’s peer support network. |

|SIDEBAR |

|ByJohn Bkila |

|Diagnosed with Ehlers-Danlos Syndrome in 2009, Oakville’s Brooklyn Mills became the inspiration behind the ILC Foundation — nearly three |

|years later, the organization has made it its mission to help children across Canada suffering from all chronic pain disorders. |

|The driving force behind Improve the Life of Children (ILC) is the need to help the little ones and adolescents, and their families, with |

|chronic pain diseases who fall through the cracks when it comes to getting the treatment they so desperately need. |

|In the last two years, Brooklyn, 20, has had 16 surgeries, most of them dealing with her spine, neck and brain. She has a shunt that drains|

|built up spinal fluid and is also on blood thinners after developing a blood clotting disorder as a result of the Ehlers-Danlos Syndrome |

|(EDS). |

|EDS is a rare condition that is difficult to diagnose, treat and care for. It affects only one in every 5,000 people and is marked by the |

|inability of the collagen in the body to hold itself together. |

|“It’s been a process,” said Rebecca Mills, Brooklyn’s mother. “Every single time she’s been ill, they can’t figure out what’s wrong with |

|her in Ontario, so we’ve ended up having to travel to the U.S. and they’ve always figured it out, in what needs to be done, and it’s always|

|been successful.” |

|Rebecca notes part of the reason why this has been the case is because there are centres in the U.S. specializing in EDS that simply don’t |

|exist in Canada. |

|Rebecca is the co-founding director of the ILC Foundation, along with executive director and trustee Sandy Smeenk, who says she co-founded |

|the organization with Brooklyn’s mom after witnessing the struggles of the Mills family and realizing they weren’t alone. |

|Medical bills adding up |

|In the last two years, the Mills have spent $150,000 on Brooklyn’s treatment in the U.S. and Rebecca says they still have approximately |

|another $150,000 they need to pay — the Mills have been twice denied reimbursement for their daughter’s treatments by Ontario’s health |

|system. |

|“The only thing we’ve received is $495 for a consultation with a surgeon in the U.S.,” said Rebecca. |

|In addition to a lack of local EDS centres, Rebecca attributes the gap in care to the fact that the condition is not very well-known and |

|there isn’t much information out there on it. |

|Lack of best-care practices |

|Smeenk echoes that, adding there is a lack of best-care practices in Canada with regards to dealing with chronic pain diseases, like EDS. |

|“In the healthcare system, we rely on best-care practices. What we’ve learned is that these do not exist for the diagnosis, treatment and |

|care of a broad and inclusionary group (children and young adults) of chronic pain diseases and disorders,” she said. |

|When she had learned these best-care practices did not exist, Smeenk immersed herself in learning and understanding why this was the case, |

|and essentially went about doing it herself, through the ILC. |

|Smeenk says she came across the National Institute for Health Research’s undiagnosed disease program in the U.S. and adapted the model to |

|develop a new program called the Difficult to Diagnose Disease (DDD) program. |

|She then presented her findings to the ILC Foundation’s medical advisory board chair, Norm Buckley, who is also professor and chair of the |

|Department of Anesthesia at the McMaster Children’s Hospital in Hamilton. |

|“The DDD program is pretty much a step one to step 10 on how to create some best-care practices here,” said Smeenk. “The plan is to have an|

|adult and child specialist in each of the major medical disciplines and have a multi-disciplinary group come together to learn from the |

|experts through workshops.” |

|In addition, the ILC is funding and facilitating a scientific workshop Oct. 4-5 to set the parameters of how the foundation will move |

|forward with its DDD program. |

|Although Brooklyn and her EDS were the inspiration behind the ILC’s creation, the foundation deals with several chronic pain conditions, |

|including: gastro-intestinal issues, such as Crohn’s disease; neuropathic pains caused after cancer treatment/care; multiple sclerosis |

|(MS); arthritis; fibromyalgia; and helping youths transition into adult care from the hospital system. |

|“There are peer support groups for the adult population, but not for teens and young adults. They just don’t exist,” Smeenk said. |

|“ILC’s review has been that the healthcare system supports the child population with their parents very well through the hospital. But when|

|you hit adolescence and your young adult years, those peer support groups aren’t there.” |

|ILC tries to fill the gap in that respect. |

|National aid |

|Since its inception, the ILC Foundation has assisted in more than 150 cases across Canada, such as: |

|• The case of Dominic Boivin, a Calgary teen who took his life after four years of struggling with constant, and mysterious, body-wide |

|pain. The ILC Dominic Boivin Fund was set up to raise awareness and funds to help bridge the gaps of chronic pain and its associated mental|

|health in children and youths through a national peer support network |

|• A 10-year-old Caledon boy suffering from neuropathic pain after his cancer chemotherapy treatment. The boy’s mother reached out to ILC, |

|which provided resources to help increase social and physical activities through sport programs, a special care package to raise his |

|spirits and provided him with tickets to a Toronto Rock lacrosse game, donated by the sports organization |

|• A 16-year-old Burlington teen who attempted suicide because of underdiagnosed chronic pain. The teen and their family met with a |

|geneticist at McMaster Hospital working with the ILC and its DDD program and they discovered that other members in the family had confirmed|

|diagnoses of EDS Joint Hypermobility. The family has since connected with several other families experiencing similar situations through |

|ILC’s peer support network |

|Raising awareness |

|Smeenk says she has been trying to raise awareness of the problem of chronic pain in children, youths and the young adult population at the|

|Ministry of Health level. |

|“In January, the Ministry of Health called us into a meeting because they had heard about the ILC from families who had written the health |

|minister saying they had received better care from the ILC Foundation than they had in 10 years in the healthcare system,” she said. |

|The nearly two-hour meeting was spent discussing the ILC and how the foundation is creating an integrated peer support network in the |

|Halton, Peel and Hamilton health sciences to help bridge the gaps in healthcare, Smeenk explained. |

|“The health minister’s office had told us they were working on a framework for chronic pain in adults, but they had no idea that children |

|in pain was such an issue — that was January 2013. That made me mad,” she admits. |

|Thankfully, Smeenk says, the doctors on the ILC medical advisory board have told her change is coming. |

|The ILC has vetted and organized what will become Canada’s first 21-day pilot program for rehabilitation for parents and children suffering|

|from chronic pain through the McMaster Hospital. |

|The program will be designed so that medical school students can participate in its delivery and familiarize themselves with the |

|“invisibilities of chronic pain” conditions, explains Smeenk. |

|“Our goal is to solve the problem of pain. It’s the critical challenge of chronic pain in children and youth to bridge the gaps,” she said.|

|“And that’s what we’re going to do through the DDD — to fund the research so that best-care practices can be developed and raise awareness |

|at the Ministry of Health level.” |

|For more information on the ILC Foundation, visit . |

|[pic] |

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| |

|Aug 13, 2013 |

|A prison of pain |

|[pic] |

|Nikki Wesley / Metroland Media Group |

|Burlington teenager Megan Brown, 16, Reflex Sympathetic Dystrophy (RSD), a condition that causes her such extreme sensitivity to touch, she|

|said even a feather brushing against her foot feels like lava dripping onto her skin. |

|Burlington Post ByIan Holroyd   |

| |

|The pain had gotten so bad Megan Brown wanted to end it all. |

|“You’re laying in bed and you’re touching the sheets and the sheets feel like they’re made of barbed wire,” she explained, her voice |

|wavering. |

|The 16-year-old suffers from Reflex Sympathetic Dystrophy (RSD), a condition that causes her such extreme sensitivity to touch, she said |

|even a feather brushing against her foot feels like lava dripping onto her skin. |

|According to the RSD Canada website, RSD is a debilitating disorder where the sympathetic nervous system becomes overactive and may cause |

|numerous symptoms including burning pain, swelling, temperature change, skin colour change, diminished motor function and severe sweating. |

|Symptoms may vary with each individual. |

|Brown sat on the couch in her Burlington living room, a room in which she has spent most of her time lately, she said. |

|Her right foot was swollen and purple and was propped up on a pillow on the floor. Her crutches, her main mode of transportation these |

|days, were set at her side. |

|“There was a moment for almost two or three weeks where I was ready to give up,” Brown said. “I was telling them, just cut it off, shoot |

|me, do whatever, just make it stop. |

|“I sort of withdrew and went into a depression. It was bad,” she continued. “What made it worse is that I knew I was hurting my mom because|

|I was spending a lot time crying and telling her just kill me. I wasn’t joking, I wanted to die.” |

|But then she got a call from the Burlington Humane Society and her outlook changed drastically. The shelter said they had just found four |

|week-old kittens at the side of the road and would Brown mind fostering them? |

|“I thought maybe this is what I need,” she said. “So I said, ‘Yes.’ We went down, we picked them up and they’ve been here ever since and, |

|next to my parents and my sister, they’re my safety line. |

|“They are what I live for at the moment.” |

|As she bottle fed Baby Doll, the smallest of the kittens, Brown acknowledged the fact the kittens would soon grow up and would have to go |

|back to the shelter. “But they’re my kittens. They’re my babies,” she said with a smile. |

|Before she was stricken with RSD, Brown hoped to pursue a career working with animals, possibly as a veterinarian or a conservation |

|officer. |

|“I was looking at becoming a conservation officer and that would require weeks of being out in the wilderness, being able to run, being |

|able to do all sorts of things,” she said. |

|“I’ve had to give up on a dream but I’ve got a new one and that’s what counts,” she added holding up one of the squeaking felines. |

|Brown started feeling the symptoms of RSD three years ago. Her first indication anything was wrong was the difference in temperature |

|between her right and left foot. |

| “One was warm and the other would be freezing cold,” she said. “We just put it off as a circulation problem.” |

|Then she started getting pains in her legs and her foot, which doctors wrote off as growing pains or sprains. |

|However, in April the symptoms worsened. Brown had somehow injured her back and was resting at home when she asked her sister Amy to get |

|her a pair of socks because her feet were cold. |

|“She looked and said, ‘Your foot is completely blue,’” recalled Brown. “And it looked like I’d been out in the snow for an hour.” |

|She said her mom, Barb Brown, rushed her to the hospital where doctors performed a battery of tests but could not determine the cause of |

|the discolouration. She was then referred to several specialists. |

|“All the doctors were saying basically the same thing, ‘There’s nothing wrong,’” she said. “I know there’s something wrong, it hurts and |

|it’s blue and it’s swollen and you’re telling me there’s nothing wrong. I had one doctor say, ‘Maybe it’s all in your mind.’” |

|Eventually the Browns were referred to a specialist who was able to diagnose her with RSD. Despite the diagnosis, the doctor said there was|

|nothing they could do except pain management, Brown said. |

|Brown described RSD as an “invisible disease” because not many people know about it, including those in the medical profession, making it |

|difficult to diagnose. |

|Recently, the family met with Sandy Smeenk, the founder and executive director of Improving the Life of Children (ILC) Foundation, which |

|advocates for young people suffering from chronic pain illnesses and promotes peer support. |

|“Because best practices in medicine do not exist for complex chronic pain, they continuously fall through the cracks of care,” said Smeenk.|

|“They are moved through the healthcare system specialist by specialist with no answers and largely they suffer in silence at home.” |

|Smeenk said the ILC Foundation is helping Brown better navigate the healthcare system and is working to put the teen in touch with other |

|young people going through similar circumstances. |

|“That will allow them to connect and not feel isolated and alone,” she said. |

|Brown’s mom, Barb was grateful to have been put in touch with the ILC Foundation because she said the last few months have been “hell.” |

|“Moms are supposed to be able to make stuff better,” she explained. “To know I can’t do anything, it hurts, and to see her in pain…” |

|Brown’s father, Barry, said he hoped his daughter telling her story would raise the profile of complex chronic pain illnesses within the |

|community. |

|He said, “The more people who are aware of it, maybe it will push people to perhaps look for it because they’re more aware that there is |

|this thing out there.” |

| |

|[pic] |

|AWARENESS AND EDUCATION ON EHLERS-DANLOS SYNDROME & CHRONIC PAIN: |

|Burlington’s Nelson High School grade 10 Civic's class students Sarah and Julie did an amazing job presenting on the importance of peer |

|support for children and teens living with chronic pain illness with ILC's Ambassador of Hope Brooklyn, who spoke about living with |

|Ehlers-Danlos Syndrome and the need for the special accommodations required to help teens attend school. Congratulations to Nelson High |

|School for showing leadership in the special accommodations you provide your student population! |

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|Top of Form |

|Sep 20, 2013  |    |

| Vote 0   0 |

|Hamilton losing pediatric neurologist to Texas |

|[pic] |

|BRITTANY |

|Hamilton Spectator file photo |

|Brittany Crichton, pictured with her mother, Kim, suffers from Ehlers Danlos Syndrome, which Dr. Benedicto Baronia has treated. |

|ByJoanna Frketich |

|A Hamilton neurologist who was one of the only doctors in Canada to treat children with Ehlers-Danlos syndrome has gone to the United |

|States. Dr. Benedicto (Ben) Baronia's last shift was Sept. 15 at McMaster Children's Hospital, where he was one of three pediatric |

|neurosurgeons. He is leaving pediatrics altogether to go to Texas Tech University Health Sciences Center to treat adults. |

|"I have mixed feelings," Baronia said. "As soon as the letters went out, I had patients come to the office on the same day. That's the most|

|difficult part for me." |

|One of the main reasons he's leaving is because his wife, who is a foreign-trained doctor with no ability to practice in Canada, was also |

|offered a job doing medical research in Texas. Baronia is from the Philippines and earned his medical degree in 1984 from the University of|

|the East Ramon Magsaysay Memorial Medical Centre in Manila. He trained in pediatric neurosurgery in both the U.S. and Canada. |

| |

|"He's been providing a great service to the families of the region," said Dr. Peter Fitzgerald, president of the children's hospital, who's|

|recruiting a new pediatric neurosurgeon. "You're always a bit surprised when people decide to move to another centre. It's unfortunate." |

|It's a major loss for patients with the rare and debilitating inherited disorder EDS which loosens joints, weakens blood vessels and causes|

|bruising. By chance, Baronia became one of the only doctors to treat it in Canada when he agreed to take on a child with the syndrome who |

|couldn't find a neurologist. |

| |

|"It was one patient after another," he said. "It's very controversial even among specialists. If there is not enough literature, the |

|evidence isn't going to be definitive." |

|The lack of research means most doctors won't treat the syndrome which has no cure. It's caused by a variety of gene mutations that create |

|problems with the material providing strength and structure to skin, bone, blood vessels and internal organs called collagen. The abnormal |

|collagen leads to symptoms as severe as ruptured internal organs, abnormal heart valves and joints popping out of place. |

| |

|"I'm upset he's leaving because he's been a pillar of hope for these families," said Sandy Smeenk, executive director of the Oakville-based|

|ILC Foundation, which advocates for children and young adults living withchronic pain. "Without him there, I don't know anyone else who |

|will do it." Baronia will [hopefully] be at the ILC's international scientific workshop on Oct. 4-5 in Oakville to discuss how to create |

|guidelines to treat people with complex chronic pain disease like EDS. "It's very frustrating," said Kim Crichton whose 24-year-old |

|daughter Brittany has the disorder. "We've had such a horrible experience here." |

| |

|The Crichtons have had to remortgage their Hamilton home to pay $150,000 for two surgeries in the U.S. that have allowed Brittany to walk |

|again, decreased her pain and other debilitating symptoms. She has gone back to Mohawk College for medical business administration. |

|"It's a huge difference," said Brittany. "I have quality of life again." |

|jfrketich@ |

|[pic] |

| |

|Susan Gamble – Sun Media October 4, 2013 |

|When Erika Crawford desperately needed a complex operation that was perfected in the U.S. and not covered by OHIP, the community rallied |

|around her cause and raised $100,000 for the bills her parents faced. |

|Now the Crawfords and Rose-Hill Liquidation are asking the community to help the family "pay it forward" by contributing again to the |

|efforts of the ILC Foundation, the charity that's helped many of those, like Erika, suffering with Ehlers-Danlos syndrome (EDS). |

|"I want people to see Erika and where she's at now because of what people did for her," says Butch McCooey, Rose-Hill's manager. |

|The store held a barbecue-fundraiser last year and McCooey was astonished at the outpouring of financial help. |

|"Last year when we had this event she was having surgery. Now she's dating one of our workers and is planning to be here at the barbecue," |

|McCooey said. |

|Life has changed for the teen since she was in a neck brace and a wheelchair last year. |

|The EDS and associated problems gave her dangerously low blood pressure and terrible headaches. She often fainted and fell if she wasn't in|

|a chair. Her joints were hyper-mobile and her head was no longer sitting properly on her spine. |

|With her parents, Darren and Michelle Crawford, Erika saw numerous Canadian doctors who were stymied by her symptoms. |

|It wasn't until ILC guided them to Maryland neurosurgeon Dr. Fraser Henderson that the family finally got a diagnosis and surgery that may |

|have saved the teen's life. |

|Henderson removed one of Erika's ribs, shaped it and placed it in her neck so it supports her head. |

|But the teen still has major health issues. |

|She receives a weekly blood transfusion and the connective tissues in her neck are stretching again. |

|"I may have to get more surgery but the doctor checked it out and I'm OK for now," Erika says. |

|Meanwhile, she's graduated from St. John's College and has moved on to Mohawk College where she's taking biotechnology courses. Her dream |

|job is to be able to help with EDS research. |

|School-work, daily naps and hours of homework leave very little time for other activities but Erika has an extremely important appointment |

|this weekend. |

|The foundation that's been helping EDS kids and adults get assistance in the U.S. has successfully set up a medical conference in Oakville |

|to connect experts in EDS treatment with Canadian neurosurgeons, geneticists and pediatricians. |

|Erika's own doctor from Maryland will speak. Neurosurgeon Dr. Fraser Henderson has invented 11 devices and concepts relating to disorders |

|of the brainstem and spinal cord. |

|On Saturday, Erika will stand before those doctors and tell her story. |

|"I'm kind of nervous, but at the same time I don't want anyone else to have to go through what I did." |

|It's unusual for a non-profit to be hosting an event like this, but organizer Sandy Smeenk said [“we are grateful to the team of |

|specialists that are coming together to begin this important process. Collectively, we are responding to the needs of the community we |

|support and work for.” The ILC is committed to funding this initiative because it's the single most important factor to address when |

|considering the challenges of chronic pain – when best practices do not exist, families attending peer support groups will continue to get |

|together to complain about what is wrong with their health and the gaps in care at the medical level. |

|"We're trying to [raise awareness and bridge gaps in education that these diseases do exist] identify the warning flags to help doctors |

|zero in on the disease," Smeenk says. "[Identifying that best practices do not exist for the diagnoses, treatment and care of a broad group|

|of chronic pain diseases is] It's an opportunity to tell a really important story, [and that the funding model in medicine does not support|

|an interdisciplinary care plan, which is needed for these complex multi-body system conditions] and funding is needed." |

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|Hear what a group of children and youth had to say about what it means to be supported by a peer support network |

|at and support the ILC Dominic Boivin Fund today. |

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|In Remembrance: |

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|Parents and teens reach out through the ILC to honour Dominic’s life to reduce feelings of isolation and depression through a comprehensive|

|peer support network! |

| |

|The Michael Pinball Clemons Foundation provided a donation of $5,000.00 in support of the ILC Foundation charitable programs and to honour |

|the life of Dominic Boivin. A cheque presentation took place at the Canadian Pain Society annual conference in Winnipeg, Manitoba in May |

|2013. |

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