shira and cake

Hi. My name is Shira and I turned 8 years old on June 16, 2013. I have SMA Type 1 or Spinal Muscular Atrophy and I live in Victoria B.C. Canada. Though I can’t do a lot 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 10 and we have the best time. Thank you for visiting my blog.





View Videos Of Shira At: www.youtube.com/Shira2

 

 

NEWLY DIAGNOSED FAMILIES SHOULD VISIT:http://www.smasupport.com and www.fsma.org/canada and www.smaspace.com

 

 

Newly diagnosed families should become familiar with the 3 experts in the treatment and care of SMA Patients:

Dr. John Bach’s Site

 

http://www.theuniversityhospital.com/ventilation/html/selectedstudies/studymuscular.htm

Dr. Swoboda’s Site

http://medicine.utah.edu/neurology/research/swoboda/

Dr. Mary Schroth

Newly Diagnosed Families Must Read These 2 Documents:

FSMA Family Guide

Breathing Basics – Respiratory Care For Children With Spinal Muscular Atrophy

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

Daddy Wins Journalism Award

http://www.jewishindependent.ca/Archives/Feb06/archives05Feb24-12.html

http://www.ajpa.org/rockowerawards2006.php

Meaningful Quotations

“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)

“Don’t ever forget that each person is a world unto himself and that we can only understand that part of the character of each individual that is in ourselves. The rest will always remain incomprehensible for us. If you want to establish new laws, they can only be valid for that part of others that we understand in ourselves.” – Gustav Mahler (Quality of life section in Dr. Bach’s book Management of Patients with Nuromuscular Disease)

“Non intervention in fatal illness becomes a self fulfilling prophecy.” – Dr. John Bach

“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)

“There are 3 kinds of lies: Lies, Damn Lies and Statistics” ~ Mark Twain (Borrowed from Benjamin Disraeli)

“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

“Among people who believe that there is only one truth-and they are in possession of it-tolerating other points of view is, by definition, impossible.” – Hella Winston (from her book Unchosen The Hidden Lives of Hasidic Rebels)

“Those of us who deal in science, even the most enlightened of us, have a strong and objectionable tendency to hubris. Hubris for scientists comes from an inadequate knowledge and appreciation of the past. Discoveries are thus made and claimed that are really rediscovered – not new advances at all, but history lessons. I have to concede priority to people who came before me. Rediscovery is every bit as good as discovery, If what is rediscovered is important and was forgotten. It is better still when the rediscovered information has the capacity to improve the lives of those around us.”-From the book THE SECOND BRAIN by Michael D. Gershon, M.D.

“Throughout human history, as our species has faced the frightening,
terrorizing fact that we do not know who we are, or where we are going in
this ocean of chaos, it has been the authorities, the political, the
religious, the educational authorities who attempted to comfort us by
giving us order, rules, regulations, informing, forming in our minds their
view of reality. To think for yourself you must question authority and
learn how to put yourself in a state of vulnerable, open-mindedness;
chaotic, confused, vulnerability to inform yourself.
Think for yourself.
Question authority.”
-Timothy Leary

We need medicine with a heart….The endless physical, emotional, and financial burdens that your family carries when a child is dying…make you totally incapable of dealing with incompetence and insensitiviy. – Salvador Avila, parent.

“A simple child, that lightly draws its breath, And feels its life in every limb, What should it know of death?” – William Wordsworth, 1798

“Palliative care works with – not instead of – other treatments. It can start as soon as the family knows the child is ill. Palliative care does not mean “giving up.” Good palliative care can help all seriously ill or injured children, not only those who are dying.” -
When Children Die: Improving Palliative and End-of-Life Care for Children and Their Families

“When the unthinkable happens the lighthouse is hope. ONce we find it, we must cling to it with absolute determination, much as our crew did when we saw the light of Gibb’s Hill that October afternoon. Hope must be as real, and built on the same solid foundation, as a lighthouse; in that way it is different from optimism or wishful thinking. When we have hope, we discover powers within ourselves we may have never known—- the power to make sacrifices, to endure, to heal, everything is possible. We are all on this sea together. But the lighthouse is always there, ready to show us the way home.” ~ Christopher Reeve

“What, then, constitutes medical humanism? I would suggest four core values: First is the preciousness (or sanctity) of each human life.  The second value is respect for human dignity.  The third core value of humanism is the celebration of human diversity.  Finally, the fourth core value of medical humanism is a sympathetic appreciation of the complexity of the human condition- how difficult it is for anyone to meet all of society’s idealized expectations regarding individual and interpersonal behaviors, and how history and circumstances have conspired to make it especially difficult for some.”~ The physician-scientist, the state, and the oath: Thoughts for our times Barry S. Coller