Six years ago May 11 - Living with Spinal Muscular Atrophy

Six years ago tomorrow was a day that changed our lives forever. We could not understand how a beautiful baby was handed a death sentence from a neurologist that did not believe in compassion. He was cold ,cruel and gave us no hope for the future with Elizabeth in it.  She was not supposed to live to be two years old and lucky if she reached a year according to the neurologist. His advice was " Take her home and love her because there was NOTHING he could do for her" .

My husband and I never gave up on Elizabeth we knew we had to fight for our grand baby with every breath it took.  My dear Aunt Ginny that passed a few years back said to me" Jeanna, you are the strongest person I know you will find something to help Elizabeth . I believe in you"   That is all it took besides divine intervention. That small piece of advice has started us through our journey fighting for Lizzy. We had to convince her mom not to give up. With the help of DR.Wang, DR.Schroth   DR. Hough, many caregivers and parents we are six years away from that most devastating day. I do not know how one doctor could tear your heart out with words but he did.

Its okay now though the this day does not hurt anymore. Lizzy is thriving and doing so well!!

We have met so many wonderful people on our journey that began almost 6 years ago. We have learned to have, HOPE, faith and patience.

My great grandmother was a mid wife and I think sometimes I inherited some of her talents in healing and helping others. I knew I could help Lizzy. I knew I had to. I guess its sort of an Intuition. Intuition can be said to be a comprehensive grip of the principles of universality. I sense many things.  I sensed Elizabeth would survive and beat her odds. She is our miracle. She is our gift.


Thank you Laura Stants for being my sounding board, my fountain of info ,helping us get what we needed for Elizabeth in the first years and being my friend since. You help save her life with letting us borrow the v-pap and humidifier when were unable to get her the equipment here for Elizabeth. Thank you to DR.Schroth for teaching us what we needed to learn to get us where Elizabeth is at today. You go above and beyond any doctor I have ever known . You take your job personally. 
DR.Wang thank you for accepting Elizabeth in your trial. She never had movement in her legs until you.
DR. Hough thank you for being there for us and believing in us. 
Thank you for all the parents/care-givers that send me the supplies  or swap me supplies I need to keep Lizzy healthy!!!!!!
Thank you Mary for all your help teaching me about diet.  you too Steph 
Thank you Colleen for all you have done for Elizabeth.
Thank you to all my friends for being there for us and believing in us!!
Thank you to the organizations that help us get  what we need to keep Elizabeth thriving and doing well when we are not able to. 


Elizabeth says "She loves herself" that alone says so much.


I posted today, as tomorrow I want to just sit around and hold my girl all day. I love her so very much!!


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


http://www.refresheverything.com/sophiascure