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I TURNED 3 JUNE 16,2008 YEAH! Hi. My name is Shira and I am now 3 years old. I have SMA Type 1 or Spinal Muscular Atrophy and I live in Victoria B.C. Canada. Though I can't do alot of the physical things that regular kids do I ran a half marathon with my daddy in 2006. I have a great big brother Sam who is 5 and we have the best time. Thank you for visiting my web site. I like it because it's pink; my favorite colour.
View Videos Of Shira At:
www.youtube.com/Shira2 Daddy Wins Journalism Award http://www.jewishindependent.ca/Archives/Feb06/archives05Feb24-12.html! http://www.ajpa.org/rockowerawards2006.php 
NEWLY DIAGNOSED FAMILIES SHOULD VISIT http://www.doctorbach.com/ and http://www.smasupport.com/ and www.fsma.org/canada and http://medicine.utah.edu/neurology/research/swoboda/ SMA FAMILY GUIDE VERY IMPORTANT PLEASE READ FINALFAMILYGUIDE.pdf PLEASE DONATE TO SMA SUPPORT A FRONT LINE ORGANIZATION THAT HELPS FAMILIES WITH EQUIPMENT AND KNOWLEDGE. THIS ORGANIZATION SAVED SHIRA'S LIFE!! http://www.smasupport.com/
Contact Brad or Maxine at: asonginthisworld@gmail.com "This book is dedicated to the health care organizations that not only raise money for research to seek cures for neeruomuscular diseases but also train and encourage health care professionals to provide the high-quality care necessary to prevent mortality while cures are being sought." - Dr. John Bach (From the dedication in Dr. John Bach's book Management of Patients with Neruomuscular Disease) "The phrase is apt to cause disquiet. There have been those among us who have arrogantly judged, from a vantage point of power, the value of a human life. They have made decisions based on their assessment of a person's quality of life about providing supports to sustain that life. This attitude peaked in Nazi Germany, where such decisions were used as the basis for genocide. We like to think that we have moved well beyond this perspective, but important decisions about people's lives are still being made from positions of power. Such practice is difficult to combat, especially in a period when
responsibility of government in the area of human and environmental services is being cut back."- Introduction by J. David Baker (Quality of Life in Health Promotion and Rehabilitation) "The creative spirit is not indestructible, but a courageous few discover that when in hell, they are granted a glimpse of heaven."-Anthony Storr "The opposite of Compassion is Indifference." - Jean S.
Bolen MD "It is not enough to be compassionate. You must act................When there is something that needs to be done in the world to rectify wrongs with the motivation of compassion, if one is really concerned with benefitting others, it is not enough simply to be compassionate. There is no direct benefit in that. With compassion, one needs to be engaged, involved." - The Fourteenth Dalai Lama "A patient is then weighed down by the same burdens as a rape victim becoming a carrier of the projections of others who ascribe reasons why this illness happened to this person. Blame - the - victim
"reasons" are punitive. They are very different from objective causes-and-effect reasons, the seeking of which can lead to solutions, cures, and preventative treatment for medical and social problems. When people are afraid that what has happened to someone else could happen to them they often distance themselves from the victim. If they can blame the victim they feel safer or superior, which is the unconscious motivation. Blame is also a way of shifting guilt onto someone else." - Jean S. Bolen MD "He who preserves one soul is considered as if he had preserved a whole world." (Talmud, Sanhedrin,
37A) "When the first Superman movie came out, I gave dozens of interviews to promote it. The most frequently asked question was: "What is a hero?" I remember how easily I'd talk about it, the glib response I repeated so many times. My answer was that a hero is someone who commits a courageous action without considering the consequences. A soldier who crawls out of a foxhole to drag an injured buddy back to safety, the prisoners of war who never stop trying to escape even though they know they may be executed if they're caught. And I also meant individuals who are slightly larger than life: Houdini and Lindbergh of course, John Wayne and JFK, and
even sports figures who have taken on mythical proportions, such as Babe Ruth or Joe DiMaggio. Now my definition is completely different. I think a hero is an ordinary individual who finds the strength to persevere and endure in spite of overwhelming obstacles. The fifteen-year-old boy down the hall at Kessler who had lannded on his head while wrestling with his brother, leaving him paralyzed and barely able to swallow or speak. Travis Roy, paralyzed in the first eleven seconds of a hockey game in his freshman year at college. Henry Steifel, paralyzed from the chest down in a car accident at seventeen, completing his education and working on wall street at age thirty two, but having missed
so much of what life has to offer. These are real heroes, and so are the families and friends who have stood by them." -Christopher Reeve from his book "Still Me." "When Danna said, "Your still you, and I love you," it meant more to me than just a personal decleration of faith and commitment. In a sense it was an affirmation that marriage and family stood at the centre of everything, and if both were intact, so was your universe." -Christopher Reeve from his book "Still Me" "To serve, to strive and not to yield." - Outward
Bound "Happiness exists in action, it exists in telling the truth and saying what your truth is, and it exists in giving away what you want most" - Eve Ensler "If you see an injustice being committed, you aren't an observer, you are a participant." - June Collwood ""Why answer a question with another question? Just do the experiment."-Colonel Holcomb MD "Silence encourages the tormentor, never the tormented." - Elie Weisel. "Make no mistake;
physical punishment may very well communicate "stop this immediately" but it also communicates "I am bigger and stronger than you, which means I have power over you and can hurt you if you do not do or act as I say." We have policies in place that most people support to guard against bullying in school, in the workplace (because adults don't like being hit, yelled at, or belittled, either), and we have laws that protect us from assault and violence. These laws are accepted as warranted and useful. We also have laws in place to guard animals from abusive behaviour.It is only fitting then that we provide our children the same rights and pay them the same respect we do
the household dog and cat." - Melanie Barwick, PhD., C.Psych "We make a living by what we get, but we make a life by what we give."-Winston Churchill |
