Karlia's Second Skin Suit

Karlia is a 7 year old bright, bubbly, intelligent, strong willed and cheeky little girl who has beaten all the odds that are stacked against her. From before birth all the doctors and Professionals had given up on her saying she was brain dead, she would never talk, walk or move in any way and that her lungs were to week for her to survive.  I was told leave her at the hospital to die and walk away.  Her condition is Multi-minnicore Myopathy ( (a muscle weakness) and Arthrogryposis Contractures of the muscles and bones)
Karlia has fought through many lung collapses and other issues to become a strong little girl that loves her family, life and her Ipad. She also attends a mainstream school with a support aid.
At present Karlia uses a powered wheelchair. She had been using a stander and walker but can not any longer as she has Severe Scoliosis (curvature of the spine) which has now begun to crush her internal organs including her heart. I have fought for a spinal operation but she has been denied due to her condition as they say her lungs will not survive the many operations she will need. I have ben told Karlia's life span has now been reduced significently because of the scoliosis.
The money raised will be used for A second skin Suit which is my last hope to use to try prevent the scoliosis from progressing further and help reduce the curvacture enough for her to go back to using the stander, walker and sitting in her wheelchair for longer periods.
Karlia is a little miracle girl that deserves a long life as she has fought many battles to get to where she is today.
There are no words to decribe the heartache Ihave knowing I will lose her to this.
I am very greatful for any help we recieve towards her suit.