The Bridge Of Life by Brad Fisher

The Bridge Of Life by Brad Fisher
Lech 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 beautiful little girl who was only given 2 years to live. There are moments I deeply identify with Avraham being sent by G-d to an unknown land.

I just returned from a Canada Day celebration that we were not able to attend at the last minute because our daughter Shira lost her vital signs and went into respiratory arrest as I was parking at the event. It’s moments like these I feel I’ve been sent to an unknown land. I don’t have time to think of anything at times like this but work on our daughter and make her live. I suctioned the secretions from her mouth like mad with one hand while pulling the thick secretions out of her mouth and nose with my other hand. I was standing on the edge of the abyss again watching our beautiful little girl slip away into G-d’s hands as I desperately worked on her to keep her with us.

Our daughter suffers from the number one genetic killer of infants and toddlers called SMA Type 1 or Spinal Muscular Atrophy Type 1. 1 in 40 people carry the gene and one in 5000 babies are born with it. It is considered such a serious threat that it’s included in the updated version for the genetic screen for Ashkenazi Jews even though the rates aren’t higher for this population over the rest of the population. At 4 months of age Shira was diagnosed with SMA because we noticed she was not meeting regular physical developmental milestones. Days like today (reviving our daughter) are not uncommon and our lives are governed by the 24 our multi-disciplinary intensive care we deliver to our daughter Shira.

I’m crying as I write this, tearful, fearful, shaken to the core of my soul once again. I hear our daughter’s beautiful little voice echoing from the other room as she lays on the floor playing with her bubby. When Shira was diagnosed we were told, “There is nothing you can do just take your child home and love her until she dies.” In some ways this statement echoes true for all of us even those of us with regular healthy kids. We all take our children home and love them until they or we die don’t we. What a thing to say to a patient and her family. Shouldn’t the more appropriate response after diagnosing anyone with a terminal illness be we can’t cure your daughter of this disease but we can support you in caring for her and help you deliver a high quality of life to her? What drives doctors to be so HOPELESS? In our world we believe there is only endless HOPE not a hopeless end. There is also a big difference between delivering daily care to a person with a life threatening illness and just diagnosing them with an illness. Most doctors have never had to care for a sick human being they just advise other’s on what to do and I’m sure 50% of the time the advice is riddled with personal biases and no experience to base the advice on. We have only met one doctor who said, “I have no experience with this illness but together we will find out what to do, create a plan and implement it.” We have realized that doctors are people to and suffer from the same daily afflictions the rest of the population suffers from and so great care must be taken when prognosis and advice is given. You must be on your toes and advocate for your child at every moment, due diligence becomes second nature and conventional wisdom must be locked away.

When death is near and has been fended off again you can’t help but feel you are walking on the Bridge Of Life (Gesher Hachaim). It’s thought that the bridge of life is a bridge between past and future. When people ask me if I have received any gifts from my experience caring for our daughter or learned anything I respond with, “ I have never been so present, I don’t have time to think of the past and I certainly don’t think of the future because the future almost always does not include being with our beautiful daughter. Being completely present, in the moment, aware of our daughter’s breath, this is the gift!” “ (Tehillim 34:13) If someone wants to live (a true life), he must “love days” – love his days to the extent that they should not be lost, but remain preserved for him(Gesher Hachaim by Rabbi Tucazinsky).” Another soul shaking lesson I have learned is visit the sick. Compassion without Action is empty and one must act and actually do something that will benefit someone in need. Bikkur cholim or Visiting The Sick has become a passion of mine. Until our daughter was born I’m afraid I did not do my share of visiting the sick. If I could pass on any advice from our families experience it is to reach out, visit and help out those in need after all it’s a Mitzva (good deed). We have felt so lonely at times, abandoned, and left out. Yes illness is scary but you will find when you get to know these people, children, with life threatening illness you will increase the joy and remove a lot of the oye from your own life.

Another question we are often asked is what keeps you going? Why do you do this? Well we love our daughter and we would do anything for her is our reply. The second answer I give is a quote from a Hasidic Sefer (from a book titled Wrestling With The Angel Published by Schoken) I read when our daughter was about a year old that gave us comfort, peace and hope. “How will we recognize those we loved when we meet them after 120 years in the world-to-come? If they died young, will they have grown old? If they were hurt or wounded, will they have healed? How will we know them, how will they know us if we have changed or aged? The answer is that we will know them, we will recognize them because they will be clothed and cloaked in the mitzvahs we do in their name.”

Three 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’


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‘It’s Not Just Tay-Sachs’
Three new screening tests for diseases available as Jewish Genetic
Disease Consortium trains more rabbis, reaches out to intermarried.

Amy Spiro

Editorial Assistant

Tuesday, May 17, 2011




Brad and Maxine Fisher with son Sam, 8 and daughter Shira, 5, who suffers from Spinal Muscular Atrophy.



When Shira Fisher was just 4 months old, her parents already knew that something was wrong. She had frequent problems with choking and serious “physical developmental delays,” said Brad Fisher, Shira’s father and full-time caretaker.

Her parents brought her to several different doctors, before she was finally diagnosed (with the help of Brad’s Internet research) with Spinal Muscular Atrophy, Type 1. SMA affects the motor neurons that control voluntary muscle activities, like walking and swallowing, and causes their degeneration. Cognitive abilities are generally not affected.

At the time of Shira’s diagnosis, “we’d never heard of it,” said Fisher, who was told by doctors that Shira had little chance of surviving past the age of 2, and that he — and mom Maxine and big brother Sam — should “take her home and love her.” The family refused to give up, pursuing experimental treatment and therapies, and Shira will turn 6 next month.

The Fishers did no genetic screening before getting married or having children. “It wasn’t on our radar,” Brad said. But today SMA is one of three new diseases recently added by the Jewish Genetic Disease Consortium to a growing list of conditions for which Jews should be genetically tested.

The JGDC now recommends that any couple in which one member has an Ashkenazic Jewish grandparent be tested for 19 separate conditions, up from 16 last year. When the organization was launched six years ago (though Jews had been tested for years before it began), it recommended testing for 11 disorders. Over the past six years, that number has grown as new screenings and tests became available. New to the list are SMA, Joubert Syndrome Type 2 and Walker-Warburg Syndrome. These diseases are not newly discovered, or recently linked to the Ashkenazic population. But since screenings for the genetic mutation for all three only became widely available this year, the JGDC is now cautioning Jews and others to take advantage of the tests.

While the medical advisory board “has known about these diseases” for a while, said Randy Yudenfriend-Glaser, chair of the JGDC, “unless you can screen, there’s nothing to do.” She also noted that couples who have been screened in the past, and are planning to have more children, should get re-tested for these disorders. And she wouldn’t rule out the list of recommended tests growing in size. “It’s never going to shrink because the diseases don’t go away,” she said. “People think we’ve wiped Tay-Sachs out of the population, but we haven’t; we’ve tested it out.” Carriers of the disease are still common in the population. The medical advisory board of the JGDC bases its decisions “on carriage rate, but also on the severity of disease,” said Yudenfriend-Glaser.

Randi Chapnik Myers knows firsthand just how devastating Walker-Warburg Syndrome can be. She and her husband were screened for Tay-Sachs before having children. When their first pregnancy, in 1995, ended after doctors said the baby would not survive beyond birth, they thought it was a fluke. And after having two healthy children, the Toronto family never imagined the problems that would ensue. Chapnik Myers lost twin babies in 2000, and then a third the next year. Doctors made a diagnosis of Walker-Warburg in two of the three fetuses. “Not only had I never heard of it,” said Chapnik Myers, “I was told after my first loss that it wasn't genetic.”

She hopes that the new availability of screenings can help other women avoid her pain. “Having to wait until 20 weeks to be diagnosed, having a formed fetus growing inside of you, a human being, and moving in to maternity clothes and planning for a child” was incredibly difficult, said Chapnik Myers. “Going through seven deliveries for three children [the third child was born after all of the losses] was a strain emotionally and very physically.”

Since 2005, the JGDC has been reaching out to families, through its community outreach program, and to physicians, with its Medical Grand Rounds Program, hoping to spread awareness of the need for genetic testing in the Ashkenazic Jewish community. Last fall, as reported in this paper, the JGDC launched its Rabbi Education Program, aimed at urging rabbis to discuss genetic screening with couples during pre-marital counseling.

“[It] was the missing link which really rounds out our program,” said Yudenfriend-Glaser. To date more than 150 rabbis across the tri-state area have attended a seminar run by JGDC, and signed a “rabbi pledge,” promising to discuss genetic diseases with young couples.

Recent training events include sessions in Buffalo and Monroe, N.Y., as well as at the Jewish Theological Seminary earlier this month. JGDC is working on developing an online system for rabbis to be trained. Those who already took part in the sessions will receive updated information about the newly added diseases.

The JGDC’s goal is to combat the major misconceptions about Jewish genetic diseases — one of which is that intermarried couples don’t need testing. To that end they are also developing means to reach interfaith couples to raise their awareness.

One of the messages the JGDC deems most important is, “It’s not just Tay-Sachs,” said Yudenfriend-Glaser. Even as she tours synagogues and Jewish centers today, Yudenfriend-Glaser encounters people who are unaware of the dire necessity for genetic testing. She met with a rabbi this year “and he told me, ‘we don’t have any of that in our lineage.’ I did a double take,” she said. “You hear this from educated people; they really don’t realize how much is out there.”

Most importantly, she said, “people need to be advocates for themselves. They should go in armed with a list of the tests and say this is what I want done.”

Read more:

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Copyright 2010 The Jewish Week


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Source URL (retrieved on 05/17/2011 - 21:15): http://www.thejewishweek.com/special_sections/healthcare/its_not_just_tay_sachs





Shira's Web Site: http://www.asonginthisworld.com

Shira's Videos: http://www.youtube.com/Shira2



"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)

"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)

"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

"He who preserves one soul is considered as if he had preserved a whole world." (Talmud, Sanhedrin, 37A)

"To serve, to strive and not to yield." - Outward Bound

"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

"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

"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

Our Weekly Shabbos Ritual!

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 can't express in words how much joy this little holiday from the world brings to our family every week. The video can be found by pressing on the link below.

http://www.youtube.com/watch?v=ad8axK3faKU&feature=player_embedded

Shira 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 19th
11am – 3pm
Bear Mountain Arena Parking Zone
The Event

Telus is setting the stage for a live rock band concert in a massive heated tent.

Jive with your family to the rhythm of:
Invasion 62
The Wharf Street Band, and
That 70’s Band!!

There will be also be tasty food stands, cool drinks, steaming hot chocolate, mascots, Telus Kinect playstations and playzones, and more!!!

Entrance is by donation only. All proceeds are for kids of Vancouver Island who - just like our honorary captain - face life-threatening conditions.

It’s all part of the 24 hour Rink Of Dreams
(March 18/19 at the Bear Mountain Arena) in support of the Help Fill A Dream Foundation.

For more information please visit:
www.rink-of-dreams.com
www.helpfilladream.com
www.asonginthisworld.com

Medical Suppliers Profitting Off Terminally Ill Chidren - The Rotten Vermon Stench Of The Medical Supply Business

THE COST OF BEING SICK by Brad Fisher

Most 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. While our system is socialized patients with very complex needs are not having these needs all met. Our daughter has a life threatening condition called Spinal Muscular Atrophy Type 1. While our daughter is physically immobile she has 110% cognitive function and can communicate but this article is not about my daughter’s illness as much as it is about medical suppliers and the system.

Since our daughter’s diagnosis I have noticed the incredible cost of medical devices for children with life threatening disease and other children with disabilities. What gets me is how prices of equipment and supplies don’t get any less expensive even while our dollar keeps rising close to parity with the U.S. dollar. I’ve noticed just looking on line that the cost of items is in many cases 30-60% less than suppliers are selling them for here in Canada. Because I was once in the retail business I completely understand how retail operations purchase from manufacturers and distributers. I know that items a retailer purchases cost less when they purchase in bulk or just have an account with a supplier or manufacturer. Then retailers turn around and sell items at the manufacturers suggested retail price which can often times be 40 to over 100 percent more than the retailer paid for these items. I understand people have to make money that is what business is all about.

What about these businesses that supply the government or in our case our socialized medicine? Why is it that the government who routinely does not cover 100 percent of the cost of items for our daughter, that have to be additionally funded by charities, cost more than when our dollar was 40 percent less than the U.S. dollar. Why does our government or socialized medical prefer to pay a local supplier sometimes 50% more for an item because they want service vs. paying 50% less from a supplier in the states thereby not forcing families to seek additional funding from charities to purchase equipment for their children!

If we look deeply into the business practices of our provincial government purchasing from local medical suppliers I guarantee we will uncover graft, over billing, and cheating on every level. I see medical suppliers as vermin feeding off profits made from sales to families with terminally ill children not caring if the item exceeds the programs allowable funding knowing full well charities will cover the rest. Yes I believe in business and profits but when government health programs are not paying the full share of the cost of equipment thereby making the public pick up the tab over and above the taxes we pay through donations to charities you have to stop and ask why? Who is in charge? Why is there no accountability? Why is the government denying equipment and other services or only funding portions of them? Why is the government paying too much for products?
I have done some comparison shopping recently on a piece of medical equipment our daughter needs and found the government could save almost $2000.00 purchasing the item in the U.S. The argument the government has is what if we need to service the item. Even if the item had to be serviced and paid for it would still be less expensive than buying from local retailers not taking the high dollar into account. Government medical contracts do not create competitive pricing. The lack of competition in Canada has bred an environment of suppliers feeding off the people that need the most help. It’s time for our government to step in and oversee purchases made and what these suppliers are doing so that children with life threatening illness are not denied equipment needed to improve their quality of life. It’s just not right that people need to go to charities to raise money to buy medical equipment while medical suppliers laugh all the way to the bank on the backs of children with life threatening illnesses, the elderly and the challenged. Shame on you medical suppliers; How do you look your children in the eyes knowing your pricing may get a child denied a much needed piece of equipment that has a life threatening illness and shame on the government employees not standing up to bad policy!! Shame, shame, shame on you!

Shira 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 could win for this incredible organization. Help Fill A Dream purhcased, delivered and erected the playground in our back yard!!!! go to : If you go to www.helpfilladream.com and click on the Aviva banner, at the top of the page it takes you to the HFAD idea....With apologies for their less than intuitive site. and please every day until the competition is finished , often and pass this around. Thank you from the bottom of our hearts!

Think 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 after many months of knowing something was wrong with our daughter, seeing 4 doctors and 1 chiropractor, all of them blaming us as knew anxious parents. We were told to take drugs, drink wine, get counselling everything under the sun as help for our daughter except actual help for our daughter. Until I read Dr. Jerome Groopman’s book How Doctors Think I really thought medical doctors really knew what they were doing. It was not clear to my wife and I that biases also crowd doctors minds making them misdiagnose or not diagnose properly like in our situation. Luckily for me my wife has the ability to think way outside the box, research and ask very tough questions in a linear manner as not to offend.

When Shira was finally diagnosed at 4 months of age clinically and then genetically with Spinal Muscular Atrophy type 1 and we were given the horrific statistics of this disease our sister in law informed us there was a doctor who specialized in treating SMA patients. Upon hearing about Dr. John Bach we felt we had to take Shira to see him as there might be hope but Dr. Bach was in New Jersey in the U.S. As my wife made a phone call to Alaska Airlines to make reservations she struck up a conversation with the ticket agent. My wife told the ticket agent we had to get to New Jersey to see a doctor because our daughter was sick and there was a specialist there. The ticket agent asked Maxine if our daughter had SMA. We were blown away. It turns out the ticket agent had a son now living in Denmark that also had a grandson with SMA. The ticket agent kindly gave our phone number to his son. The next day I got a call from Josh Mortenson who told me his entire story about his son’s diagnosis and how the NIV Protocol of Dr. Bach had saved his son’s life from the medical system and all the conventional thought around SMA.

The truth in the words Josh told me, his experience so close to ours and many others spurred us on to seek out what Dr. Bach was doing. The next thing that happened is we joined smasupport which confirmed that our story and experience with the medical system was not unlike every one else’s experience. Everyone else’s experienced also included being told there was nothing they could do, there was no hope, take your child home and love them. But this was not the case.

There are things you can do to help patients whether they are very sick or just have a broken leg. Our kids are very sick and they need a lot of support. I read everything I could voraciously and also compiled and libraried every single bit of data I could find on the treatment and care of SMA patients. I realized early on that all the doctors advising us had absolutely no information on the treatment and care of SMA patients other than end of life care (just let your child die) or tracheostomy and conventional treatment with it.

We realized early on that there were 2 camps of thought in the SMA world and that was 1) There are treatments which can insure your child does not die an untimely death while treatments are being sought.
2) Let your child die.

All of the doctors we ran into before Dr. Bach were of the philosophy “Your child will have no quality of life you should let them go.” Who are these people? Do these doctors have sick children themselves? Do they have children? What are their religious beliefs? How many SMA patients have they worked with on a daily basis? Do they know of any treatments for SMA? Do they know of any doctors that treat SMA patients as a specialty?

We had a lot of questions and the more we asked the less answers there were. So why didn’t people know about the NIV Protocol of Dr. Bach? Why do people just follow what a doctor says to them without questioning?

There seems to be 2 camps of people. I have met people that love to care for children with disabilities and think the world of these children. I have met people that struggle horribly with regular children and can’t seem to keep their lives together even thought they have 2.5 healthy children, a mortgage, a career, cars and take holidays and their lives are hell.

Is life hell if you have a disabled terminally ill child or is life opened up for you? I was certainly a different person before Shira’s diagnosis letting myself be controlled by people in positions of power believing education, money, position etc. proved they should be listened to. But the reality is these things are fabricated, created. If these people in these positions go home and close the door and stop doing what it is that put them there in the first place those positions would cease to exist.

What doesn’t cease to exist is our child’s disability and what it takes to care for these children. I have had people tell me to let my child die because it will ruin my real estate career. We have had people tell us that our child is a gift from God and God gives you what you can handle. There are many ways to perceive your reality and many ways to deal with one’s own reality. To tell you the truth trying to justify and figure out our reality based on what other people thought started to become very confusing. We realized that no matter how much we struggled with what was happening with us we had to look past ourselves and start to deliver the NIV Protocol to Shira. As Dr. Bach says, “Non intervention in life threatening illness is a self fulfilling prophecy.” We had to get past our pain, our suffering, the words of others, the lack of others experience, the distorted views of others with no experience in these matters and start doing something for Shira.

My father used to tell me all the time, “If you want something done right do it yourself.” Well this was it. Here was Dr. Bach and his 2 published books “Management Of Patients With Neurological Disease” “Non Invasive Ventilation” and our doctors with no experience, no publications nothing. It was obvious what we wanted to do. If we wanted our child to live as long as possible in hopes there is a cure while she is alive then we had to intervene. We couldn’t wait for a system that was so hung up on policy, doctors personal biases, lack of resources, lack of knowledge etc. etc. we had to do something now.

As soon as we got in touch with other parents on smasupport we realized our experience was not our own it was endemic and attached to any disease with a bleak prognosis. Doctors give up when there is no cure. There was a huge chasm between what doctors told us and the reality of what parents were doing and the results we saw. The internet is Shira’s life saver. Because of the internet we were able to seek out doctors that do care, that believed there was a quality of life to be delivered and to be lived. We realized that doctors while being trained basically the same way its how doctors think that make them different and set them apart. Some doctors are totalitarian and its there way or the highway while some doctors give you many choices, help educate you, work with you and support the families wishes and desires. It would be wrong to lay the whole blame for the terrible journey families have to take through a valley of misinformation and horrible support. Many families themselves have serious internal strife among family members which does not allow for an environment of high level care.

So what it all comes down to is perception and the creation of what reality you want and then advocating for it. There is no one reality that has to be adhered to there are choices. We as parents can choose to look at our children and put labels on them like normal, disabled, terminally ill what ever you wish. The label I have chosen is the label human being. Shira is as much a human being as anyone else and we will deliver what she needs to live as good a life as she can the same way we do for our other child and each other. This journey called life has no one way and nothing is guaranteed. We only have our perceptions and biases created by our early socialization of how we were brought up and all the life experiences we have gone through. In the end our perceptions of our reality have to be let go to be able to support another human being. In simpler terms it means, “taking a walk in someone else’s shoes.” Caring for children with Spinal Muscular Atrophy type 1 is an emergency situation. It takes dedication. You have to deliver Multi disciplinary intensive care to your child daily and become adept at doing medical procedures you never thought you would have to do. It’s a choice to do these things. I have watched people put 100 percent of their energy into fundraising and choose to let their children pass. I have watched people choose not to do anything and let nature take it’s course. I have watched parents trache their children. I have watched parents do what we are doing following the NIV Protocol of Dr. Bach. I have seen everything in between.

It’s my hope that by reading what I have written here you will questions authority, gather information, speak with other parents and create your own reality based on perceptions created through experience not solely on other people opinions. The worst opinions we have heard are from those in the medical field while the best information, life saving information has also come from the medical field. As they say in business Caveat Emptor (Buyer Beware). Don’t believe everything you hear and don’t compare yourself with others as it will lead you down the wrong path. Look past yourself and see your child/patient and do what you know is right based on fact not fiction. Research, research, research and speak with lots of parents with children living passed the biases and misinformation of uncaring health practitioners who don’t care.