Living with Spinal Muscular Atrophy -Frustration with Ignorance

I have to say I am very frustrated with the medical profession in this area when it comes to SMA. How many babies are going to die before they actually accept that there is a care guide for SMA.
I spent the morning talking on the phone with the parent of the baby that earned his wings a few weeks ago at the tender age of 9 months old. He lost his life at in area hospital. He was a twin. His sister shows no symptoms but has not been tested yet.
Listening to this mom's story brought the same grief I felt over 7 years ago. How can these specialists in central IL can be so unprofessional  not to research the information about SMA and give the parents NO HOPE? They actually told them its inhumane to trach a child with SMA. What? Its inhumane to let a baby die of suffocation and starvation. He did not die from SMA he died from ignorance of the doctors in my opinion.
I miss DR.Hough so much because he listened and did everything he could to help Elizabeth.

Recently there was a video posted on a well known SMA doctor that  questions prolonging these kids lives. Really? What the heck  This doctor britches got so big that they are playing GOD now? This doctor does not deserve to care for these precious children. The video was quickly removed  with in hours after some parents saw it.  Why does this doctor  adorn herself/himself an SMA doctor? What is going on? What gives these doctors the right to say these things? She/he is a traitor to our cause. She/He is traitor to them self.

We need doctors that will fight for us like DR.Schroth!! She has helped us many times in our fight to save Lizzy. She is true to us and these kids.
These children are precious gifts and need some special care from people who love them. DR.Schroth is that that person to us and many kids.

There is a family care guide for SMA. http://jcn.sagepub.com/cgi/content/abstract/22/8/1027  Its been published since 2007 This is the universal care guide for SMA. There is no excuses for doctors any where not to know about this.

We need to get more awareness out there!! We need to make these doctors listen to us!! What can we do?
I need ideas here to get these doctors to read the information and practice this care plan!!

" We believe in miracles because we live with one!!'
www.our-sma-angels.com/elizabeth