"Elizabeth, our scientifically proven theory and more Brick walls"- Living with Spinal Muscular Atrophy

My oh my what a CRAZY week in the SMA World. Big lessons I have learned. When you vote for a charity online to WIN big bucks make sure YOU KNOW WHERE THE MONEY IS GOING!! Oh well...... Im done being upset over this. I just thought that Gene therapy and many other things needed some funding but who am I??   Its all Politics.... I have to remember that.  I just care so much for these kids and funding a trial that has been done a few times before and failed..... Like, I said who am I? 

Then,  the Amino Acid diet was "dogged" yet again at another SMA conference. I ought to be used this one by now.  Why do the researchers dog the diet? I have been in this world 7 years next month and I had to battle this since Lizzy was a year old. Finally, I proved it worked for Elizabeth and many other kids. People LOOK AT THE BLOOD WORK!! Look at the kids for goodness sake!! Thank you Nate Lee for your comments on the diet!!!! GOOD Job for telling them the diet works!!  they  SAY NOT scientifically proven ? What ever!!! LOOK AT LIZZY !!!  Just take a group of kids not on AA and a group that are. Lets see which ones look better and do better. Hmmmmmm that is a NO BRAINER!!!  DUH... I am talking Type 1s here. Okay, seeing what the diet has done for so many. How is that not "proof" enough. Just the difference from a dairy based diet to an amino based diet is a total miracle. They have more strength, secretions are so much less, and they are healthier than kids on a diary based diet if it is mixed correctly. They do not like it because we have found that the diets are individualized for each child. The base is the same but the supplements maybe different. Lizzy is on donor breast milk with the amino acid formula with Fruits and vegetables. Give me a break. I thought this issue was getting better. I hope the data base works.

Another glitch we have encountered.  Lizzy was approved for the Trilogy( Bipap/VENT) through her state medicaid  but.... was denied through Apria. Scratching my head here, Okay, a device approved from the state because Elizabeth needs it and then the DME refuses to order it for her because it costs too Much.
Okay, let me SCREAM!!!!!!!!!!!!Brick walls, red tape and lots of "political hogwash" this week.

Lizzy is doing fine though. What a trooper.She is been one ornery kid this week!! Got to love it!!

IEP tomorrow....... whew big stuff.

Jessica is leaving moving to Kentucky with my sister Mindy. She got laid off and is in a deep dark place right now. Not sure what I can do to convince her to stay.We will miss her. My siblings all moved away now my child. It hurts but we will survive. Its kind of like the first day school when you walk them to the school in the front door to their kindergarten class. You know its their new beginning and the end of them being totally dependent on you . Good Luck Jess we will miss you. I hope you find what you are looking for.

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