red deer advocate, october 16, 2014

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October 16, 2014 edition of the Red Deer Advocate

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    Red Deer AdvocateTHURSDAY, OCT. 16, 2014

    Your trusted local news authority www.reddeeradvocate.com

    Four sectionsAlberta . . . . . . . . . . . . . . A3,A5Business. . . . . . . . . . . . . C5,C6Canada . . . . . . . . . . . . . . A6,A7Classified . . . . . . . . . . . . D1-D4Comics . . . . . . . . . . . . . . . . . . D5Entertainment . . . . . . . . . . . . D8Sports . . . . . . . . . . . . . . . B4-B8

    INDEX

    PLEASE RECYCLE

    Top court considers right to die

    The so-called right to die was back on Canadas conscience Wednesday as the Supreme Court began hearings.

    Story on PAGE A6FORECAST ON A2

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    Region getting 28 more spaces

    BY SUSAN ZIELINSKIADVOCATE STAFF

    Twenty-eight continuing care spaces for seniors will open up in Central Al-berta in six months as part of the prov-inces plan to move 700 seniors out of overcrowded hospitals.

    Within Central Alberta, 12 spaces will be located in Drumheller, and four spaces each in Lacombe, Ponoka, Stettler and Wetaskiwin. No other de-tails were available from AHS.

    Brenda Corney, Friends of Medicare Red Deer chapter chair, said its not continuing-care beds that are needed its long-term care beds, which pro-vide a higher level of care.

    Its not continuing-care patients who are in our hospital beds. The peo-ple in our hospital beds are people waiting for someone to die in a long-term care facility in order to get a bed, Corney said on Wednesday.

    The Central Alberta spaces are among the 464 continuing care spaces or beds that will be created by redi-recting existing resources.

    On Tuesday, the provincial govern-ment also promised to spend $60 mil-lion on new continuing care or long-term care beds for the rest of the 700 seniors to free up acute care and emer-gency beds in hospitals.

    I live on my heels.Robin Brand is talking about her

    daughter Brooke Aubuchon.Six-year-old

    Brooke has an extremely rare fatal disease that has no cure and no treat-ment. Batten disease has al-ready claimed her older broth-er, Alexander.

    O f f i c i a l l y known as Late Infantile Jansky-Bielschowsky disease, those who have it will die, usually be-tween the ages of eight and 12.

    There are fewer than 10 cases in

    Canada. Worldwide, there are about 700 cases. It is an inherited nervous system disorder. As time passes, chil-dren affected become more and more mentally and physically disabled.

    Brooke and Alexander were both born healthy. In the beginning, they met all their growth milestones like walking when they were supposed to, says Robin, 30.

    They both talked and said words, but they never did speak in sentenc-es.

    The family lives in Innisfail. Dad Darcy Aubuchon is the sole bread-winner and Robin is a full-time stay-at-home mom. They have four other children, a four-year-old daughter and three boys, ages 11, 13 and 15. (The 11-year-old does not live full time with the family as he is Darcys son from a previous marriage.)

    All we have is hope

    Please see BROOKE on Page A2

    SIX-YEAR-OLD INNISFAIL GIRL DIAGNOSED WITH INCURABLE FATAL ILLNESS

    MARY-ANNBARR

    BARRSIDEContributed photoBrooke Aubuchon, 6, has Late Infantile Jansky-Bielschowsky disease, an extremely rare fatal disease that has no cure and no treatment. Those who have it will die, usually between the ages of eight and 12.

    LONG-TERM CARE

    Exhibit tackles mens suicideBY SUSAN ZIELINSKI

    ADVOCATE STAFF

    The impact of mens suicide upon family and friends has been translated into images as part of the University of British Columbias photo exhibition Man-Up Against Suicide that will be in Rimbey from today to Monday.

    By coincidence, 11 out of the 61 par-ticipants who contributed photos to convey how they felt were from Rim-

    bey.Genevieve Creighton, part of the ex-

    hibition team, said photos were thera-peutic for some participants as it al-lowed them externalize their emotions or memories of those who died. Other photos represented ways to prevent suicide.

    Creighton said one woman from Rimbey took a photo of a field with a couple of pickup trucks in the dis-tance.

    She said it represented why mens

    suicide is higher in rural areas. They go into the industry at a real young age and it kind of teaches them about being tough ... and thats where they learn they cant talk about things that are bothering them or talk about sad-ness, or if they are struggling around issues of sexual orientation. They have to be silent about that just because the industry is so masculine, said Creigh-ton about the photo.

    Please see SUICIDE on Page A5Please see CARE on Page A2

    FRIGHT NIGHT AT THE SITE

    Contributed photo

    Fright Night at the Site offers the public a horrifying experience at Rocky Mountain House National Historic Site. The 1.3-km haunted trail walk along the banks of the North Saskatchewan River will leave you screaming. The trail will be open to the public Oct. 17-18. There will be a Family Fright on Oct. 19 from 2-5 p.m.

    C3Myrna Pearman looks at Saw-whet OwlsPeek-a-Whoo

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    CARE: Staffing inadequateRed Deer is really short of long-term care beds,

    Corney said.But adequate staffing is important and hasnt

    been happening according to last weeks auditor generals report into long-term care, she said.

    They can build whatever they want, they can announce whatever beds they want, but until the people in the beds now are receiving adequate care, with adequate staffing, then its not good enough.

    Facilities need more boots on the ground, she said.

    szielinski@reddeeradvocate.com

    BROOKE: Suffered asix-day seizure

    Delayed speech, seizures and vision problems are the beginning signs of Batten disease.

    When Alexander was diagnosed, he was almost five years old. He died at age eight, on Sept. 20, 2011. At that time, younger Brooke had not been diag-nosed with Batten disease. But then she began hav-ing seizures and in the rarest of things, and surely among the most difficult, her parents learned in 2012 that Brooke also had the fatal illness.

    It was really hard at first. A real shocker be-cause we werent expecting it to happen again, says Robin.

    Brooke is so different than other Batten children ... (its) going real slow with Brooke ... her brother went real fast.

    Robin follows a support group and says a number of children have passed away in the past month.

    Its really hard, especially when you follow the childrens stories for years.

    When Brooke was accepted for a gene therapy clinical trial in New York in 2013, the family hit a wall because, while the treatment cost was covered by U.S. clinic, the living costs of Brooke and her par-ents was not. They could not afford to go.

    Pleas to the provincial government for living costs funding were to no avail. Kerry Towle, MLA for Innisfail-Sylvan Lake, got involved trying to obtain funding for the family.

    In the end, community fundraising resulted in $30,000 being raised so they could go to New York, and stay at the Ronald McDonald House there. Brooke took the treatment very well, said her moth-er, but its uncertain if it was effective.

    I think it has (made a difference). To a certain point. Like at this stage her brother was already blind, bedridden, couldnt talk anymore. He was ... tube fed. ... He was just not there anymore.

    Brooke, shes still there. She still does eye con-tact with you. She still has words, a couple words ... she can still see and shes going to school (kindergar-ten), says Robin.

    I dont regret going to New York if its going to help my child or someone elses child.

    Cant we just take the chances, because if we dont take the chances, is there ever going to be a treatment?

    The cost of the trip was $17,000, and the remain-ing money, which is almost gone, has been used for Brookes care, for things like the many trips some-time planned, sometimes unexpected to doctors in Calgary. This summer Brooke had a six-day seizure and was hospitalized in Calgary.

    They do receive some funding to help with the costs of a critically ill child but it doesnt even cover the cost of gas to Calgary and back.

    Anything back is great, says Robin.On Wednesday, Brooke and her mom went to the

    Alberta Childrens Hospital in Calgary so Brooke could be fitted with ankle stabilizing braces.

    The family has a hard time making ends meet. Recently, their van was damaged in a hit and run, and they were forced to get a new vehicle. They have used both the Innisfail food bank and the Christmas Bureau at times, says Robin.

    Brooke is stable right now. Her seizures c