Shira’s story began when she was 4 mos. old and we  noticed that Shira was choking and  did not move like her older brother Sam when he was the same age. Shira  when  s was taken to 4 Dr.’s and 1 chiropractor over her first 4 months of life as she was choking and crying about 6 hours a day like a child with colic.  One day while we had a nanny helping us at home Shira started to choke even more than usual.  It was at this point that Maxine really made a connection between Sam’s development and Shira’s.  Maxine really noticed that Shira was not physically doing what Sam did at the same age.  I asked Maxine if anyone had done a developmental test on Shira and she didn’t think so.  We called our regular GP who had also seen Shira from birth and she told us that doctors now only look for signs of social disorders and they don’t perform developmental tests for children and if we thought that something was wrong we would need a referral.  I immediately got on line and downloaded 3 developmental tests from renowned paediatric hospitals in the U.S.  after less than 10 minutes of testing I had concluded from my testing that Shira was Hypotonic or floppy baby syndrome which is usually a sign of some kind of neurological problem.  I immediately called a different doctor Maxine had been seeing with Shira for breast feeding issues and Maxine rushed Shira over to her.  While there the doctor agreed that Shira had Hypotonia and that something was definitely wrong.  The doctor suggested we get a referral to a neurologist which could take 2 to 8 weeks.  I asked the good doctor if she thought if it was an emergency if someone couldn’t move their limbs and she said , “That all depends.”  I told her that if she was laying on the floor and unable to move her limbs I would consider it an emergency and she agreed that taking Shira to the emergency room at our local hospital  might be a good idea.  That evening an on call emergency paediatrician gave us a clinical diagnosis of SMA and the next day the neurologist gave us another clinical diagnosis of SMA.  We were told that there was nothing we could do as SMA Type 1 is a terminal genetic disorder.  Shira might live to be 4 but the neurologist felt she most probably would not live to be a year old. Through the first 4 months of Shira’s life we had taken Shira to 4 different doctors and a chiropractor specializing in paediatrics and Colic.  All the doctors misdiagnosed Shira and told Maxine she was just a worrisome mother, Maxine might have post partum, we were worrisome parents and even went so far as to try and treat Maxine for her anxiousness with drugs etc.   2 weeks after Shira’s emergency visit with the paediatrician and neurologist Shira’s genetic blood test confirmed the clinical diagnosis.

In the 2 weeks that proceeded the clinical visit with the doctors in emergency our life was hell, we were devastated, our dreams shattered; we didn’t know what to do and we were told there was nothing we could do; no cure, no therapies just take your child home and love her until she dies.  Well it turns out that there were choices of  Therapies that wouldn’t cure Shira but they could  extend Shira’s life and  allow Shira to live a quality life and not die an untimely death.

  • Why would the doctors tell us there wasn’t anything we could do to make sure Shira could live a quality life? No doctor in BC had fully implemented anything but strictly palliative care to SMA Type 1 patients.  In BC Dr.’s  had no experience with Dr. Bach’s NIV Protocol therefore, there was nothing that could be done. We were also told by some doctors that doing anything was false hope. Huh?
  • Why didn’t the doctors know about the therapies? That’s a good question as its all over the interenet, on the Families Of Spinal Muscular Atrophy web site , SMA Support Inc’s web site , published in Dr. Bach’s books etc.
  • Video below shows us going to the media to advocate and get our daughter started on Dr. Bach’s NIV Protocol.

1st video:

  • Experience at BC Childrens Hospial: We decided to go to BC Children’s hospital and meet with the respiralogist and neurologist there that were in charge of all the At Home Ventilated Patients in BC. The doctor who said, “they understand SMA” should have recommended and or inoculated shira for RSV at our visit. The doctor sent out a 7 page protocol and in it ridiculed us as parents calling us “parents that enjoy seeking media attention.” This document was sent to everyone we deal with in our local medical community.
  • Shira getting Sick and ending up in the hospital for 52 days because she was not inoculated. Shira suffered from sleep apnea for 6 months because she was not given a respirator to help her breath more easily at night and get the rest she needs.

2nd video:\

  • 1. signed waiver for to make doctors feed Shira. What doctors did not know about Shira.
  • After the hospital

3rd video:

My Mom and Dad have been strongly advocating on my behalf with the medical system to make sure I get the best care and most appropriate care! I am now on the Non Invasive Protocol of Dr. John Bach of the University Of Medicine and Dentistry Of New Jersey ; I also have 2 good Dr.’s at the Victoria General Hospital there names are Dr. Beck and Dr. Barclay they are Pediatric Intensive Care Dr.’s. My daddy says that if it wasn’t for I might not have lived this long. Now I have many friends that I have met on line at SMA SUPPORT like my friend Lily (past away May 12, 2008), Skyler, Madison, Ethan, Logan (past away last year), Charlie and many, many more that also have SMA like me. Many doctors said I would live maybe 1-4 years but that I was weak and I might not live a year. Only Hashem (g-d)  knows how long I will live. I am now almost 4 years old and in 2006 I ran The Royal Victoria Half Marathon with my daddy. I love walking in the woods with my famiy, playing at the park, watching girls fast pitch baseball at our local park,  talking with the doggies on the trail, saying hello to horses and listening to the birdies. Reading is one of my most favourinte things to do. Elmo, Elmo, Elmo (oye) is my favourite show to watch.

Shira turned 6 years old on June 16, 2011

Foot Note: The 3 doctors who are the authorities in implementing Dr. Bach’s NIV Protocol are 1) Dr. John Bach of the University of Medicine and Dentistry of New Jersey 2) Dr. Kathryn Swoboda of the University of Utah at Salt Lake 3) Dr. Mary Schroth at The University of Wisconsin at Madison.  For all of their contact information go to the links page on this web site and they are listed under doctors.