Spinal Muscular Atrophy Canada

tag:blogger.com,1999:blog-20591383456618763302012-01-31T12:52:57.435-08:00Spinal Muscular Atrophy CanadaSpinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.comBlogger1291100tag:blogger.com,1999:blog-2059138345661876330.post-67372098804205080442011-11-13T10:02:00.000-08:002011-11-13T10:25:59.267-08:00Shira Playing In Her Sling

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-67176901087731092552011-09-07T09:24:00.000-07:002011-09-07T09:26:27.270-07:00Mogul Using Own $100 Million in Race to Cure Daughter Prompts Novartis Aid

Videohttp://www.bloomberg.com/vhttp://www.blogger.com/img/blank.gifideo/74900090/Mogul Using Own $100 Million in Race to Cure Daughter of Spinal Muscular Atrophy Prompts Novartis Aidby Brad Fisher on Wednesday, September 7, 2011 at 9:11amMogul Using Own $100 Million in Race to Cure Daughter Prompts Novartis Aid QBy Robert Langreth and Alex Nussbaum - Sep 6, 2011 9:01 PM PTBloomberg Markets

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-88552576052799278502011-08-17T12:58:00.000-07:002011-08-17T13:20:26.013-07:00Physio Therapy and The Vestibular System

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-15723106160507747472011-08-15T17:02:00.000-07:002011-08-15T19:53:07.409-07:00Shira and Maxine Singing

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-87317073734387474522011-08-10T07:29:00.000-07:002011-08-10T07:29:51.404-07:00Willows Beach - Access Denied

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-13803359050669900452011-08-04T13:28:00.000-07:002011-08-04T13:30:28.713-07:00Disabled visitors left high and dry on area beaches

Disabled visitors left high and dry on area beaches Brad Fisher pushes daughter Shira’s stroller-wheelchair up an uneven pathway from Willows Beach.Emma Prestwich/News staffBy Emma Prestwich - Oak Bay NewsPublished: August 02, 2011 10:00 AMBrad Fisher pants as he heaves his daughter Shira’s specialized stroller-wheelchair up the steep, uneven sand path from Willows Beach.He enlists the help of

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-54536116097688933852011-07-06T17:49:00.001-07:002011-07-06T17:53:02.304-07:00The Bridge Of Life by Brad Fisher

The Bridge Of Life by Brad FisherLech Lecha. G-d said to Avraham, “Go (further) away-for your (own benefit)-from your land, your birth place and your father’s house, to the land which I will show you.(Parshas Lech Lecha)” I’m not the most religious Jew but I am spiritual and I identify deeply with my culture and heritage and religion. I’m the father and main caregiver to a 6 year old

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-33735451134468986922011-05-18T07:21:00.000-07:002011-05-18T07:23:49.297-07:00Three new screening tests for diseases available as Jewish Genetic Disease Consortium trains more rabbis, reaches out to intermarried.

Published on The Jewish Week (http://www.thejewishweek.com)Home > ‘It’s Not Just Tay-Sachs’ --------------------------------------------------------------------------------‘It’s Not Just Tay-Sachs’ Three new screening tests for diseases available as Jewish GeneticDisease Consortium trains more rabbis, reaches out to intermarried. Amy Spiro Editorial Assistant Tuesday, May 17, 2011 Brad and

Living and caring for a child with a terminal illness is not only about coping it's also about trying to find ways to keep strength and thrive during the greatest challenge of our lives. Here is a video showing how Maxine, Shira and Sammy bake challah every shabbos. Shabbos is the jewish sabbath and the ritual around the Sabbath is full of light and joy and bonds our family close together. I

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-33830598424418660532011-03-01T09:05:00.000-08:002011-03-01T09:22:26.837-08:00Shira Fisher, honorary Rink Of Dreams captain

Shira Fisher, honorary Rink Of Dreams captain,invites one and all to the“Rock and Roll Rink Of Dreams” Family Tailgate Party!!Saturday, March 19th11am – 3pmBear Mountain Arena Parking ZoneThe EventTelus is setting the stage for a live rock band concert in a massive heated tent. Jive with your family to the rhythm of: Invasion 62The Wharf Street Band, and That 70’s Band!!There will be also be

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-47045005537797314882010-10-13T12:46:00.001-07:002010-10-13T12:47:58.767-07:00Medical Suppliers Profitting Off Terminally Ill Chidren - The Rotten Vermon Stench Of The Medical Supply Business

THE COST OF BEING SICK by Brad FisherMost healthy people do not realize or understand the perils caregivers and patients must deal with on a day to day basis. You think that if you get sick you will be cared for. Here in Canada we have a socialized system of medicine. Don’t think for a minute we aren’t paying for this medical because we have very high taxes and these taxes pay for our medical.

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com3tag:blogger.com,1999:blog-2059138345661876330.post-82081421870690033152010-10-09T08:23:00.000-07:002010-10-09T08:27:59.563-07:00Shira Is The Face Of Help Fill A Dream

Dear family and friends. Please vote for Help Fill A Dream. Help Fill A Dream is a front line organization that fulfills children's dreams that have life threatening illnesses. Help Fill A Dream aslo helps with medical expenses, purchasing medical equipment and more. Please vote for Help Fill A Dream. This costs nothing but 3 minutes of your time and lots of money is being given away that we

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-15998849744398604612010-10-05T08:12:00.000-07:002010-10-05T08:14:39.561-07:00Think For Yourself, Question Authority, Create Your Own Reality!

Living with a child that was supposed to have died before the age of 2 is a wild ride. Every day I pinch myself because Shira is here and thriving against all the local doctors expectations. What made my wife and I disbelieve what the doctors were saying to us. Reliving the early journey we took with our daughter diagnosed with a terminal illness went something like this. At 4 months of age

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com2tag:blogger.com,1999:blog-2059138345661876330.post-382209001025998982010-09-15T10:19:00.000-07:002010-09-15T10:20:45.697-07:00Diet and SMA ~ Our children have different baseline "NORMAL" so calculate for it stupid!

The problem is is that the dieticians working with doctors (even the good doctors) calculate diet to the 10th percentile using the CDC growth charts for regular children. Doing this is NUTS!!! if you take into accounte the physical makeup of an SMA patient based on Dr. Kelly's findings i.e. that "that sma type 1 patients have muscle mass as low as 5-10% that of a regular child and that muscle

CLICK HERE FOR LINK TO ORIGINAL ARTICLE Four-year-old Shira Fisher loves to play, sing, and most of all, go on runs with her dad.Shira was born with Spinal Muscular Atrophy Type 1, a genetic disease that causes muscle weakness and affects voluntary muscle movements. Her condition requires that she be kept in a supported, reclined position.Scott (left) with Brad and Shira at the UVic track testing

Wishing our Family and friends a happy and sweet new year.L'Shana Tovah Tikotevu V'techataimu- Shana Tovah Umtukah. May all our prayers pierce the Heavens, especially our prayers for Peace in Israel and around the world.

I don’t know where to start as we have been having so much fun. Sammy has been in many different camps this summer. Besides the camp he has been going to since he was 4 years old the Victoria Conservatory Musical theatre camp was a big highlight for Sammy and for Shira. As many of you well know I am a huge advocate for staying away from social gatherings of any kind with Shira. Whenever you

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-40026957380307116792010-08-15T11:22:00.000-07:002010-08-15T11:26:37.897-07:00Spinal Muscular Atrophy~ Our Day At India Day

Here is a video of us at India Day Victoria, B.C. It was too hot but the kids had fun! http://www.youtube.com/watch?v=j0sBpvn8LNQ

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-26773324664716737712010-08-08T07:29:00.000-07:002010-08-08T07:45:01.864-07:00Shira Watches Mommy Perform At Hillside Mall

Shira is now 5 years old and believe it or not she has only seen her mom perform in public 2 times. The reason for this is we keep Shira away from social gatherings. 90% of children with SMA Type 1 are dead by the age of 2. These statistics are based on no intervention and high levels of exposure to other people which lead to death through disease. Shira has had relatively few

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com2tag:blogger.com,1999:blog-2059138345661876330.post-71939693556334881762010-08-06T23:10:00.000-07:002010-08-06T23:15:02.447-07:00Tonight Shira said, "I have SMA. I want to be grown up!"

I'm not sure but I think Shira is thinking when she is grown up she will be able to walk and be like everyone else. Now i'm thinking how do I deal with these questions. I've just started searching for answers to these questions and found this article on www.fsma.org web site:How do I explain SMA to my young child?Dear Parent,You asked how to tell your son about his SMA without damaging his soul.

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com2tag:blogger.com,1999:blog-2059138345661876330.post-84800379358697616852010-08-05T18:07:00.000-07:002010-08-05T18:09:27.269-07:00Soul and Giving

On Wed morning Shira, myself and our care worker went to a mall to watch Maxine perform for children. Maxine is a music therapist with a masters degree in psychology but she also has a show created specificly for toddlers. It's not easy to keep a toddlers attention for 45 straight minutes but Maxine is a master at it and really understands what children need. Shira has only seen Maxine perform 2

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com2tag:blogger.com,1999:blog-2059138345661876330.post-84986920976306872372010-06-20T09:03:00.000-07:002010-06-20T09:04:56.594-07:00Probiotics cuts intensive care infection

Probiotics cuts intensive care infectionPublished: June 17, 2010 at 7:01 PMOMAHA, June 17 (UPI) -- Ventilator-associated pneumonia in critically ill patients in hospitals was cut in half after probiotics were given to the patients, U.S. researchers say.Lead author Dr. Lee E. Morrow of the Creighton University says ventilator-associated pneumonia affect an estimated 30 percent of patients who are

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-67184836746731197782010-06-18T13:00:00.000-07:002010-06-18T13:01:14.540-07:00Justifying My Existence - Daniel Silveria

Justifying My Existence - Daniel SilveriaHollee J. ChadwickPublished September 18, 2009 by:Hollee J. ChadwickMore: La House Movers La Movers Quadriplegic Daniel Pearl Plate TectonicsI was born with Spinal Muscular Atrophy and, as a result, have been a quadriplegic for most of my 33 years. My mother didn't know prior to my birth that I would be afflicted with this illness. I was diagnosed when I

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-50556125925606260992010-06-12T07:21:00.000-07:002010-06-12T08:58:48.471-07:00Physical Therapy: Flexibility, Fitness and Fun

Physical Therapy: Flexibility, Fitness and Fun

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-29133918985441452732010-05-04T21:51:00.000-07:002010-05-04T21:55:05.795-07:00Advances in supportive care have altered the natural history of SMATherapeutic developments in spinal muscular atrophy Sage Pub. April 2010

Advances in supportive care have alteredthe natural history of SMAAny review of therapy for SMA would be remisswithout a discussion of the important and evolvingrole of multidisciplinary supportive care.SMA leads to predominantly proximal muscleatrophy and weakness, and the potential for medicalcomplications such as scoliosis, joint contracturesand ventilatory impairment [Wang et al.2007]. This

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com4tag:blogger.com,1999:blog-2059138345661876330.post-80847668458952045322010-04-28T09:28:00.001-07:002010-04-28T09:28:51.046-07:00My Take On The FightSma Conference Addendum

Here is something very interesting Sarah the dietician at the conferencereally was negative about elemental amino acids and then mentionedthere are other choices like poly peptides like she Knew something wedidn't. here is some info from Dr. Bach which again is about 10 yearsold"Harpey et al. felt that there was a significant improvement in... "text_exposed");''>See More strength and function for

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-91025650045646257022010-04-26T23:14:00.000-07:002010-04-26T23:15:10.227-07:00My Take On The FightSma Conference

First off I would like to say thank you to FightSma for doing this as its very important to have lots of open dialogue on all of the subjects of SMA.I do have to say that I shudder when a parent with a toddler with SMA type 1 starts to ask questions and through the questioning we find out they have no equipment and the child is having trouble sleeping among other things. This tells me we haven't

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-9850922695156315342010-03-26T08:32:00.000-07:002010-03-26T08:34:38.610-07:00Please Help Us Fund Raise!!!!!

I’m asking for your assistance. I am joining thousands of Canadians who don’t take their muscles for granted, by participating in Walk For Muscular Dystrophy 2010 to raise funds for Muscular Dystrophy Canada.You can help me by making a secure online donation using your credit card. Click on the link below:http://my.e2rm.com/personalPage.aspx?SID=2518511Your gift helps Muscular Dystrophy Canada

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-42386310496604763372010-03-09T13:54:00.000-08:002010-03-09T14:21:14.025-08:00Shira Receiving Beckman Motor Oral Therapy

Shira receives Beckman Motor Oral Therapy every day right after her CPT session in the morning.Beckman Motor Oral Therapy Handout with Diagrams and Directionshttp://www.asonginthisworld.com/images/client_pics/Beckman%20Motor%20Oral%20Therapy.PDFBeckman Motor Oral Therapy Part 1http://www.youtube.com/watch?v=KKxbexuV804Part 2http://www.youtube.com/watch?v=mY6ZujX-o_4Part 3http://www.youtube.com/

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-61473778172679628982010-03-07T10:38:00.000-08:002010-03-07T10:40:22.824-08:00Shira Yesterday and Today

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-86806691389440380822010-03-02T09:22:00.000-08:002010-03-02T09:45:04.409-08:00Only one week left until the NJ Premiere of Time of my Life! (Wednesday March 10th)

Dear friends. If you live in NY or NJ and need some inspiration please go see this movie. It is about the life of Simcha Esther a woman that contracted cancer and fought the bravest fight you can imagine. I am proud to say that Simcha was my friend and an inspiration to me. Simcha left 3 children and a husband, she was in her early 40's. While she was alive Simcha set out to make a

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-10807441826902609702010-02-26T09:15:00.000-08:002010-02-26T09:19:01.079-08:00Great Videos Explaining What SMA Is

Here are some excellent videos by FightSma that explain what SMA is. Shira has SMA type 1. An Introduction to Spinal Muscular Atrophy - Dr. Bob Leshner http://www.youtube.com/watch?v=-DgUVrvrNfs&feature=youtu.beSpinal Muscular Atrophy Type 1 - Dr. Bob Leshnerhttp://www.youtube.com/watch?v=QRJ2pxVxUQw&feature=relatedSpinal Muscular Atrophy Type 2 - Dr. Bob Leshnerhttp://www.youtube.com/watch?v=

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-82773416880857833222010-02-19T09:39:00.000-08:002010-02-19T09:47:23.336-08:00The physician-scientist, the state, and the oath: Thoughts for our times

"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

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-40781153494216970122010-02-16T22:04:00.000-08:002010-02-16T22:07:05.352-08:00Sophia Doebbert and Dr. Mary Schroth, Our American Family Children's Hospital

There are some doctors that are real heroes. Dr. Mary Schroth is one of these heroes. Rarely do you see this amount of compassion from a Doctor but Dr. Schroth really cares about all her patients so much. Maxine flew to Wisconsin to meet with her because we were advised by Doctors at B.C. Children's Hospital not to contact U.S. doctors because they wouldn't be there for us in our time of need.

Click on the link below to watch Shira's videohttp://www.youtube.com/watch?v=z1ETv6qIPLU&feature=player_embedded

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-69575286165772019432010-02-07T07:58:00.001-08:002010-02-07T08:01:16.165-08:00What Is a Life Worth? Research on the cost-effectiveness of medical treatments pits our emotions against our pocketbooks.

What Is a Life Worth?Research on the cost-effectiveness of medical treatments pits our emotions against our pocketbooks.By Sharon Begley | Newsweek Web Exclusive Feb 5, 2010This is the kind of news that unleashes hysteria about "death panels" and "health-care rationing," but here goes: an analysis of genetic screening for an incurable, untreatable disease called spinal muscular atrophy shows that

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com4tag:blogger.com,1999:blog-2059138345661876330.post-59762347050124028852010-02-05T22:07:00.000-08:002010-02-05T22:14:13.073-08:00Respiratory Care Options For Children With Neuromuscular Weakness by Dr. Mary Schroth

This is a very important video to watch if you want to have a deeper understanding of the treatment and care of SMA or Spinal Muscular Atrophy. Dr. Schroth goes through all the modes of care from daily care to intubation and extubation, non invasive vs. tracheotomy, and more a must watch!! click on the link below to watch the videohttp://nch.dataserv.tv/NCH/Viewer/Viewers/Viewer240TL3Banner.aspx?

When Talking Is Not EnoughBy Maxine FisherPosted: Monday, February 1st, 2010"Music can name the unnamable and communicate the unknowable." -Leonard BernsteinMusic therapy, as defined by the Canadian Association for Music Therapy, is the skilful use of music and musical elements by an accredited music therapist to promote, maintain and restore mental, physical, emotional and spiritual health.

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-88287317664372591802010-01-23T14:44:00.000-08:002010-01-23T14:45:43.135-08:00Gwendolyn Strong Foundation Comes In 6th and Wins $100,000

"Never doubt that a small group of thoughtful, committed citizens canchange the world. Indeed, it's the only thing that has." -- MargaretMeadWe did it! We really, truly did! Together, we accomplished themonumental. Together, we raised a TON of awareness of SMA. Together,we are having a material impact on curing it. Together, we arechanging this cruel disease -- FOREVER! Out of more than

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com6tag:blogger.com,1999:blog-2059138345661876330.post-21493111025747326772010-01-17T21:09:00.000-08:002010-01-17T21:10:21.732-08:00Vote for a cure for SMA and Shira!!!!!

Brad FisherDear family and friends on facebook. Please vote at http://www.voteforsma.comBy voting for the Gwendolyn Strong Foundation this charity will donate 100% of the $1,000,000 proceeds to SMAresearch. This research could save our daughter Shira's life. It is free to vote and only takes a moment. ... Please pass this along to your friends. Thank you from the bottom of our hearts. Please

IF.....IF you can keep your head when all about youAre losing theirs and blaming it on you,If you can trust yourself when all men doubt you,But make allowance for their doubting too;If you can wait and not be tired by waiting,Or being lied about, don't deal in lies,Or being hated, don't give way to hating,And yet don't look too good, nor talk too wise:If you can dream - and not make dreams your

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-63049875660015938002010-01-09T21:17:00.000-08:002010-01-09T21:24:29.704-08:00One of those weeks when you can feel yourself age

This week was another one of those weeks when you can feel yourself age. People look at you and say, “you look tired.” 2 weeks ago Shira started to get fevers off and on and by last Friday Shira was definitely sick. Last Saturday Shira crashed hard (lost her vital signs) from a mucous plug. There is always a fine line when working on a child in this type of emergency situation. These crashes

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-853242694823007582009-12-29T11:10:00.000-08:002009-12-29T11:16:41.948-08:00CanAssist Swing-Enabling System

Shira Fisher loves the thrill that comes from soaring through the air on a swing. The four-year-old girl first tasted the freedom of swinging when her dad rigged a special swing for her in the backyard of their Victoria-area home. But because Shira has Spinal Muscular Atrophy, a genetic disorder that has severely affected her muscular development, she has never been able to swing anywhere

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com5tag:blogger.com,1999:blog-2059138345661876330.post-85369128684066139712009-12-28T07:50:00.000-08:002009-12-28T08:19:45.051-08:00Shira Driving Her Power Chair Despite The Cold

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com3tag:blogger.com,1999:blog-2059138345661876330.post-9574559196895744492009-12-22T23:44:00.000-08:002009-12-22T23:48:37.024-08:00Our Children. Our Gifts.

A new consciousness has permeated our household. Yesterday I changed Shira’s schedule. Shira used to go to bed at 10PM and wake around 9 A.M. and by the time she got off her respirator and all her physio was completed it would be around noon. I moved Shira’s schedule back by waking her at 7 or 7:30 A.M. Now Shira is waking at the same time as our 7 year old son Sammy and going to bed at the

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-4055639988713727052009-12-06T06:26:00.000-08:002009-12-06T07:14:09.620-08:00Death, not disability, is the end of the world

I've been up since 5:30 this morning because the roof on our back porch has almost been torn off by the high winds here. In between going outside in the freezing cold and placing 10 lb weights on the roof to hold it down I've been doing a little research into quality of life and came upon this article. I have to say after I saw Million Dollar Baby I was left with a bad taste in my mouth.

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-72101537372790999412009-11-24T13:06:00.000-08:002009-11-24T13:12:20.305-08:00Beckman Oral Motor Therapy-Sometimes It All Comes Together

A few months ago I discovered a new oral therapy while reading through posts on http://www.smaspace.com The therapy is called Beckman Oral Therapy http://www.beckmanoralmotor.com/. Because SMA Type 1 patients get jaw contractures and have very limited range of motion in their jaws I have always been concerned about what the future holds for Shira's ability to keep speaking. I knew I had to take

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com43tag:blogger.com,1999:blog-2059138345661876330.post-34975765749957404112009-11-18T08:35:00.000-08:002009-11-18T08:37:07.821-08:002 Great Books By Christopher Reeve--Advocacy

"So many of our dreams at first seem impossible, then they seem improbable, and then, when we summon the will, they soon become inevitable. If we can conquer outer space, we should be able to conquer inner space too--the frontier of the brain, the central nervous system, and all the afflictions of the body that destroy so many lives and rob our country of so much potential."While Christopher

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com8tag:blogger.com,1999:blog-2059138345661876330.post-47277915382657856792009-11-16T22:42:00.000-08:002009-11-16T22:44:59.583-08:004 year-old Shira Fisher is terminally ill in the news

CLICK ON ME TO WATCH VIDEO OF NEWS CASTVICTORIA - 4 year-old Shira Fisher is terminally ill with Spinal Muscular Atrophy or SMA. Her parents were told she had months to live, when Shira was first diagnosed four years ago. But the young girl continues to defy the odds. Her parents, Brad and Maxine, have become advocates for Shira and other SMA kids. Last week, they were told their application to

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-85205631684295550352009-10-12T08:41:00.000-07:002009-10-12T08:46:07.880-07:00OUR BEAUTIFUL DAY WALKING ON DALLAS ROAD

CLICK ON ME TO WATCH OUR NEW VIDEO!

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com198tag:blogger.com,1999:blog-2059138345661876330.post-52632892602794977672009-10-07T16:53:00.000-07:002009-10-07T17:05:16.113-07:00Shira Swings On Her Converted Tumbleform Chair

"A girl, my daughter. She is a being more rare, more beautiful, purer,more perfect and more delicate than the wildest dream of a poet. I cannever believe her to be my own flesh and blood. Her beauty is awell-spring of purest water-of-life, and t...o look upon her is to drinkand drink and drink again.......She is rare, a perfect creation, a work of purest art. A delicateflower that bloomed in the

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-8648693694967197232009-09-25T10:13:00.000-07:002009-09-25T10:15:03.431-07:00Letter Warns About Tricky Dosing With Liquid Tamiflu for Kids

Letter Warns About Tricky Dosing With Liquid Tamiflu for KidsPublished: Friday, September 25, 2009 | 6:45 AM ETCanadian Press(HealthDay News) - Doctors warn that parents across the country could give the wrong dose of Tamiflu to their children as treatment for the H1N1 swine flu because the dosing instructions don't always coincide with the measurement markings on the syringe that comes with the

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com2tag:blogger.com,1999:blog-2059138345661876330.post-12781967340001408222009-09-23T14:09:00.000-07:002009-09-23T14:49:56.802-07:00Seasonal flu shot may increase H1N1 risk: early data

Seasonal flu shot may increase H1N1 risk: early dataLast Updated: Wednesday, September 23, 2009 | 4:01 PM ET Comments0Recommend1CBC NewsPreliminary research suggests the seasonal flu shot may put people at greater risk for getting swine flu, CBC News has learned."This is some evidence that has been floated; it hasn't been validated yet, it's very preliminary," cautioned Dr. Don Low,

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-55630804840500686682009-09-23T09:04:00.000-07:002009-09-23T09:05:00.673-07:00'39 Pounds of Love' star dies at 41

Click to PrintThe Jerusalem Post Internet Edition'39 Pounds of Love' star dies at 41Sep. 22, 2009Brian Blondy , THE JERUSALEM POSTAmi Ankilewitz, the subject of an award-winning documentary who braved a debilitating illness for 41 years, finally succumbed to it on Sunday.Ankilewitz was born with Spinal Muscular Atrophy - an extremely rare and often fatal condition that limits physical growth and

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com16tag:blogger.com,1999:blog-2059138345661876330.post-55889944961240485592009-09-20T07:52:00.000-07:002009-09-20T08:07:32.049-07:00Shira Goes Riding For Her First Time

Shira was turned down as a good candidate by the Cowichan and Vancouver Island Riding For The Disabled Associations. Their policies and candidate requirements are very limited here and don't serve the majority of disabled people. Upon further investigation I interviewed more people turned down by the Associations than those that get to ride. Purely psychological reasons for riding and the

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-40181890319779353172009-09-18T00:33:00.000-07:002009-09-18T00:35:47.921-07:00Shira Walking In Her Stander Part 1

Click HERE

Lately we have all been having a really great time. Shira is changing in leaps and bounds developmentally. Our days are filled with walks, therapy, play dates, beach time, walks in the woods and up the mountain, watching videos, taking walks in the stander. Today was an especially wonderful day. Have you experienced those days when you do a wide variety of activities, unplanned and it was

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-30732234422429941772009-08-13T20:41:00.000-07:002009-08-13T20:42:15.840-07:00Ventilation After Breathing Tube Removal May Alter Outcomes

Ventilation After Breathing Tube Removal May Alter OutcomesPublished: Thursday, August 13, 2009 | 7:15 AM ET Canadian Press (HealthDay News) - People with chronic respiratory disorders who receive early non-invasive ventilation after a breathing tube has been removed are less likely to suffer respiratory failure or die, a Spanish study has found. The study included 106 people on mechanical

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com16tag:blogger.com,1999:blog-2059138345661876330.post-14757150142589081632009-07-20T22:32:00.001-07:002009-07-20T22:32:50.824-07:00Time Flies When Your Not Having Fun

The past few days have been tough. On Saturday night at 1:30 in the morning Shira’s SAT level crashed. I was in a deep sleep with the monitor beside me but as you all know I sleep with one eye open and both ears on alert. I flew out bed and into Shira’s room and she was not doing well! I started frantically working on her performing CPT and using cough assist. Shira’s mucous was thick like

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com3tag:blogger.com,1999:blog-2059138345661876330.post-30900503707672570172009-07-16T13:09:00.000-07:002009-07-16T13:13:58.738-07:00Sammy Is Fundraising Please Give!!

Hello everyone. Our son Sammy is helping to raise funds for Chai Lifeline an organization that helps terminally ill children and their families. Camp Gan Israel the camp Sammy is attending is holding a jump a thon where the kids do jumping jacks to raise money for sick kids. Please sponsor Sammy as this is a front line organization that truly helps families and children in crisis when they are

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-65536554092000236392009-07-13T00:39:00.000-07:002009-07-13T06:24:15.851-07:00Fun In The Sun with Horses, water park, Fan Tan Alley

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-30609702813660434322009-07-07T08:01:00.000-07:002009-07-07T08:02:55.933-07:00U.S. stem cell funding rules finalized

U.S. stem cell funding rules finalizedLast Updated: Tuesday, July 7, 2009 | 8:54 AM ET Comments4Recommend3The Associated PressNew rules unveiled Monday allows for research on older stem cell lines to qualify for U.S. government funding.New rules unveiled Monday allows for research on older stem cell lines to qualify for U.S. government funding. (Paul Sancya/Associated Press)The U.S. government

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com28tag:blogger.com,1999:blog-2059138345661876330.post-20540211910237066062009-07-06T14:01:00.000-07:002009-07-06T14:03:19.731-07:00Diet and Advocacy Spinal Muscular Atrophy. Use this to fight for your kids health!! CDC Growth Charts for Children with Special Health Care Needs.

http://depts.washington.edu/growth/cshcn/text/page1a.htmThe CDC Growth Charts for Children with Special Health Care Needs.Diet is one of the main factors of an SMA patients daily therapies. Without good nutritional support SMA patients don’t thrive well. Diet creates a lot of problems in our doctor patient relationships also because there is so little information as to how diet affects SMA

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-8089068940038788292009-07-03T17:13:00.000-07:002009-07-03T17:30:30.871-07:00Shira Sings Rock With You by Michael Jackson

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com94tag:blogger.com,1999:blog-2059138345661876330.post-74540852117050675782009-06-29T14:14:00.000-07:002009-06-29T15:00:11.027-07:00Shira's 4th Birthday Party Video

What a day. Today was Shira’s birthday party. For several days we have been preparing for the party. Our good friends Marie and Kenny dropped off some table and chairs for us to use yesterday. Sammy also helped me clean up the yard, put away all the toys/pieces of toys and other assorted pointy dangerous items laying around. This morning we all woke up early with excitement. My mother

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-41763103664872943422009-06-17T09:39:00.000-07:002009-06-28T07:40:37.015-07:00Shira Singing Happy Birthday

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-15170102692846568662009-06-16T15:04:00.000-07:002009-06-28T07:39:49.965-07:00Spinal Muscular Atrophy Shira Fisher Turns 4

We are deeply moved and proud to announce that today is Shira’s 4th birthday! The last 4 years have been years that we would never wish upon anyone yet we are thankful, grateful and feel truly blessed by our daughter Shira. Shira is beautiful, happy, and smart but more than that Shira is a human being like all of us reading this not just a sick kid. The biggest worry most parents celebrating

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-8463766296848591782009-06-13T22:00:00.000-07:002009-06-13T22:10:39.064-07:00Spinal Muscular Atrophy - Shira speaking and playing cars

Shira Is Turning 4 and You are invited to Shira's Party Sunday, June 21 Time 11-2PM Where: Our back yard 4478 Majestic Dr Victoria, B.C. RSVP Maxine 250-686-7582 Children must be accompanied by an adult!!! Please do not come if you are sick which includes, runny nose, cough etc. If you have been sick you must be symptom free for 24 hours before coming over

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-50741725210716902572009-06-08T20:16:00.000-07:002009-06-08T20:17:40.505-07:00Charlotte and Shira On Mt. Doug

I think this photo just says it all!

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-83665018670794363372009-06-07T15:21:00.000-07:002009-06-07T15:47:33.683-07:00Shira Singing I Was Made For Lovin You Baby by KISS

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-84993904773592371922009-06-02T11:36:00.001-07:002009-06-02T11:51:29.457-07:00Weight, Height, Growth-Spinal Muscular Atrophy

Almost everything to do with the care of an SMA Type 1 child is up for debate. Except for the Conventional wisdom of Tracheostomy all other modes of therapy are often looked down upon by physicians and other medical professionals. Can you imagine doing double blind studies on terminally ill children allowing some to just die while giving life saving treatments to others. I have observed many

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com3tag:blogger.com,1999:blog-2059138345661876330.post-89863422198512959272009-05-27T06:59:00.000-07:002009-05-27T07:26:57.305-07:00Serendipity? Coincidence? Fate?

Yesterday was another really good day for Shira and I. Poor Sammy is starting to feel a little left out so I’m hoping we can move upstairs today or tomorrow. Our close friends from Israel are in town now and I’m really looking forward to spending some quality time with them. Yesterday was a lot of fun. Shira and I decided to go to the Victoria Art Gallery. Shira had more fun playing with

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com5tag:blogger.com,1999:blog-2059138345661876330.post-48036223215452185692009-05-25T00:27:00.000-07:002009-05-25T00:33:06.529-07:00Strength, Courage and The Bear

When you care for children with SMA you have as much routine in your day as a soldier does in the military. Today we went awol from our routine a little with Shira sleeping in an extra hour so we missed our morning Chest Physio session. As soon as Shira was ready I asked her if she wanted to go downtown and have another adventure and her answer was a loud Ahhh Ha! We have now mastered the art

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com3tag:blogger.com,1999:blog-2059138345661876330.post-70919901581256379262009-05-23T23:52:00.000-07:002009-05-23T23:55:07.380-07:00Traveling Solo With Spinal Muscular Atrophy Type 1

The last few weeks have been tough. Sammy was endlessly sick the last part of the winter and now Maxine is very sick. Maxine went in to have swabs and tests done so we will hear on Monday if she has anything nasty. Today was a reprieve for Shira and I that have lived in our basement way too long this winter. A Channel news that helped us in the beginning by putting pressure on the Health

I'd be lying if I didn't say that things have been tough for me hearing about all these children and people dying from SMA. Some parents and children I have met only briefly through email and telephone conversations some more intimately through video conferencing. It's hard to experience the pain of children dying over and over again, trying to understand the suffering of parents, syblings and

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-77859270180342901242009-05-07T20:26:00.000-07:002009-05-07T20:27:16.054-07:00Lately i've been thinking a lot about what it means to be a hero.

Lately i've been thinking a lot about what it means to be a hero.www.wikipedia.com Definition: hero (male) and heroine (female) came to refer to characters (fictional or historical) that, in the face of danger and adversity or from a position of weakness, display courage and the will for self sacrifice – that is, heroism – for some greater good, originally of martial courage or excellence but

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com2tag:blogger.com,1999:blog-2059138345661876330.post-38094354580962119262009-04-22T19:35:00.001-07:002009-04-22T19:37:45.358-07:00Watch This! Happy Earth Day!

Click on me and watch! Happy Earth Day.

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-38900444310485681272009-04-22T17:08:00.000-07:002009-04-22T17:09:45.252-07:00Sammy and Shira Sliding On Our New Playground

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com2tag:blogger.com,1999:blog-2059138345661876330.post-68462126215153243122009-02-07T09:35:00.001-08:002009-02-07T09:35:32.212-08:00Shira Update

Hi all. I didn't here back from the hospital regarding Shira's sputum samples but I guess no news is good news. Shira is feeling better anyways so hopefully it was just a bad case of teething. Shira doesn't do well when teething and because her fever lasted for 3 days and stopped as abruptly as it started I will assume that is what it was. Whew!! Today Help Fill A Dream comes to our home to

Thank you for the well wishes everyone. Life is crazy with SMA. We spent our Anniversary in 2 separate parts of our house. I was in the basement with Shira and Maxine was upstairs with Sammy who has a cold. We move downstairs to our basement the minute anyone starts showing signs of being ill in our house to try and keep Shira healthy. Sammy is feeling a lot better but he has one of those coughs

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-70381711375359128862008-12-31T15:50:00.001-08:002008-12-31T15:50:51.279-08:00SHIRA'S CRITICAL CARE COLD PROTOCOL

SHIRA'S CRITICAL CARE COLD PROTOCOLShira has had 2 major hospitalizations since being diagnosed with SMA Type 1 at 4 months old. The first time Shira was hospitalized was with RSV or Respiratory Synctal Virus at 6 months of age. During the first hospitalization I read doctor Bach’s book Management Of Patients With Neurological Disorders and Non Invasive Ventilation as well as had the Paediatric

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com5tag:blogger.com,1999:blog-2059138345661876330.post-75428142127462953962008-12-31T11:15:00.001-08:002008-12-31T11:15:22.169-08:00SHIRA UPDATE

Shira UpdateWell we have been back from the hospital since the 24th of December. When Shira was sick she was on bipap for about 17 days straight which means she became dependent or biapap dependent. Bipap is bi level positive airway pressure and is the type of respirator she uses. This type of ventilation is considered non invasive vs. tracheostomy which is considered invasive because it takes

It has been a while since I have done an update mostly because we haven’t had much help around here until recently so my time was limited. I have finally laid down the law with myself and started getting outside with Shira no matter what the weather is like. I have purchased a down mummy sleeping bag from Mountain Equipment Co Op which works fantastically for Shira and her equipment. I am able

What's been going on? Not too much really which in the world of SMA is a good thing. Shira's health has been stable and she is developing cognitively in leaps 'and bounds. Shira is a joy! You really learn about how each of our souls far out weighs what we look like, what we own and what we do. It's an interesting study how we human beings get so sidetracked from what's important. We are watching

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com3tag:blogger.com,1999:blog-2059138345661876330.post-54475870486412389612008-10-06T19:46:00.000-07:002008-10-06T19:47:30.203-07:00Some People Have No Heart

Today Shira and I were downtown. While there I took Shira to our favorite local toy store. Shira wanted a bunch of barn yard animals so we chose a bunch. I had been in this store many times through the years and have always gone there first to support local business. I noticed at the cash register it said 25% off starting next week. I asked the cashier if we could have the discount because its

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com3tag:blogger.com,1999:blog-2059138345661876330.post-56120884596673348692008-09-29T20:26:00.001-07:002008-09-29T20:35:18.880-07:00Rosh Hashanah

Just a quick post. Maxine made us a beautiful dinner tonight for our Rosh Hashanah celebration (Jewish New Year). Sammy and Maxine baked beautiful Challah and I made the Rugalach. We didn't have anyone over or invite any families because it just gets too complicated when someone is sick and then the whole family can't come so we just do our own thing. Shira is getting to really know the

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-68453528515342650932008-09-19T15:20:00.001-07:002008-09-19T15:20:39.351-07:00Have A Good Weekend And A Good Shabbos

It's been a good week. Sammy is in his second week of grade 1 and loving it! Sammy starts soccer this weekend. He actually asked to play in a certain league because his friends are playing in it. What a guy. This week the kids next door made a little zip line they were playing with in their garden and they wouldn't let Sammy play so I took Sammy to Home Depot where we purchased 50 feet of rope, a

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com4tag:blogger.com,1999:blog-2059138345661876330.post-78611207990064232162008-09-14T09:03:00.000-07:002008-09-14T09:05:08.583-07:00Breathing

Breath in.Breath out.When running from the unknown takes the place of stepping into the abyssBreath in.Breath out.When avoiding the sick takes the place of reaching outBreath in.Breath out.When indifference takes the place of compassionBreath in.Breath out.When fear takes the place of loveBreath in.Breath out.When dogma takes the place of the devineBreath in.Breath out.When war takes the place of

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-46388487579048052602008-09-11T13:10:00.000-07:002008-09-11T13:16:21.594-07:00Dr. Schroth. One of Our Heroes!!!

Along with Dr. John Bach of UMDNJ and Dr. Swoboda of U of Utah Dr. Schorth of the U of W at Madison is a wonderful Dr. and person. You can't be in better hands when you have Dr. Schroth looking after you.http://www.madison.com/tct/news/CTstaging/303127

Our darling babywith blue eyeswith golden hairwith ivory skinwith your scent You may not move,Like other kids do,So we will be your arms and legs.You may not speak,A typical language.But we understand every word you say. At nightI stand over you.Patting your back,Rocking you to sleep.In my selfishness I want you to awake.In my selfishness I want to play with you more.In my selfishness I want to

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1tag:blogger.com,1999:blog-2059138345661876330.post-46242431619936655132008-09-03T22:37:00.001-07:002008-09-03T22:44:00.405-07:00Our Boy Started Grade 1

Boy does time fly!! Sammy started grade one this week. We are so proud of Sammy. Sammy spent all summer in different camps and really enjoyed himself. Sammy is a little man these days. He keeps himself busy doing a lot of dress-up, performing his own shows for us and Shira and playing with kids in the neighborhood. He is so good with Shira it just breaks your heart to watch how gentle and

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com3tag:blogger.com,1999:blog-2059138345661876330.post-13066332751206301772008-08-30T15:21:00.000-07:002008-08-30T15:22:52.012-07:00Our Friend Sophia Doebbert

Here is a video about our friend Sophia Doebbert and her family. They have helped support us tremendously since Shira's diagnosis. Enjoy! http://www.youtube.com/watch?v=RPGClmsUPnQ

Here is an interesting quote about discovery I found enlighteneing. I have been told so many times that some of the therapies I want to use on my daughter are old or old therapies being used again as if that should disuade me from using something that is affective. Dr.'s are funny!! May we pray to g-d that he give our good doctors wisdom!! I hope everyone is having a good week and enjoying life.'

Dealing with the public and living with SMA is enough to make you loose your mind. We had another person quit working us recently to take on another job that would be better for her career. I don't have problems with people wanting to follow their dreams but I do get upset when they are dishonest and only use us. One of the questions we ask potential employees is, have you applied for any

Discovery of lifeGentlemen! Today is the first time that I realize the presence of life! Gentlemen! I beg you to leave me alone for a moment, so I can savor this formidable, spontaneous and recent life emotion, which today, for the first time, enraptures me and makes me happy to the point of tears.My joy come from what is unexperienced of my emotion. My exultation comes from the fact that before

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com0tag:blogger.com,1999:blog-2059138345661876330.post-9273084824713419982008-08-18T07:24:00.000-07:002008-08-18T07:34:36.722-07:00Weak Type 1 Or Just Incompetent Doctoring Again and Again

This story below showed up on my google alert. My heart and prayers go out to the parents. Judging by the article it sounds like another case of bad doctoring as the article does not mention the doctors giving the parents any choices i.e The NIV PRotocol of Dr. Bach, Tracheostomy etc. Most of the time kids die untimely deaths because of misinformed, conventional Dr.'s that can't get past

Spinal Muscular Atrophy - Shira Fisherhttp://www.blogger.com/profile/00373066290179840383noreply@blogger.com1