'Second skin will give our little girl longer to live'

HOPE: Karlia Craig has dreams of becoming a mermaid or princess one day.   

CONFINED to a hospital bed almost 1000km from home, Karlia Craig is barely alive as her spine slowly crushes her lungs and heart. The little eight-year-old from Mackay is no stranger to struggle, having been diagnosed with multi-minnicore myopathy at birth, a rare congenital muscle disorder, she has gone from strength to strength trying to achieve a "normal" life. She had previously been able to attend a mainstream school with a support aid, enjoyed time spent playing with her older sister and had dreams of being a mermaid or a princess. Now however, after developing severe scoliosis (curvature of the spine), her health is deteriorating rapidly with a "second skin suit" her only hope for a prolonged life. "We had an emergency airlift to the Brisbane hospital two weeks ago and when we got here she nearly passed away," mum Coraley Craig said as she held back tears.

Coraley Craig, Celeste Medd, Karlia Craig, Danielle Tucker and Rachael Craig.

"I think she nearly gave up there for a little while, but she's doing much better at the moment. "Luckily her health has improved and we just came out of the intensive care unit yesterday. "The doctors have said though that if we don't get the second skin and try it out, it's not going to be long for her." Coraley is not unfamiliar with adverse predictions however, with doctors expecting Karlia to die during delivery. Even after birth, they anticipated she wouldn't live long and would not be able to walk or talk. It was when she was two that Coraley first detected her daughter's scoliosis, noticing strange appearances on the x-rays. The doctors recommended to wait and see how the condition developed, until finally she deteriorated enough to require a brace. By this time however it was too late, the brace couldn't stop the worsening of her condition.

Karlia Craig recovers after long periods of medical support in Brisbane.

From this point onwards Karlia has spent most of her life between a wheelchair and a walker, until her scoliosis worsened to the point where she could no longer touch the ground with both feet at the same time. Doctors now refuse to perform spinal surgery on Karlia as her lungs are unlikely to survive the multiple operations she will need, which leaves the second skin suit as her only option. A second skin suit is similar to a lycra suit but has an internal frame to support the wearer. For Karlia, the suit could slow down the progression of her scoliosis and hopefully prolong her life. The only barrier at the moment however is cost. Coraley is a full time carer and cannot afford the $2700, plus extras for fittings, for the second skin suit. Karlia's doctors have said she only has a month or two left before her condition is so extreme that even the suit will no longer be able to stop her spine from crushing her organs. It is for this reason Coraley is appealing to the public through a gofundme page to help raise money for the purchase of a suit, and hopefully many more years of life for Karlia. "I'd appreciate any help we can get for the second skin suit because it just means she could have a longer life with us as a family."

Donations can be made at gofundme.com/2avpz58. 

 

 

  

Source : Daily Mercury , 21st Sep 2016