‘I couldn’t even lift a milk carton’: Girl with rare disorder inspires idea for life-changing surgery
A little Queensland girl with a rare genetic condition has undergone surgery with the help of a ground-breaking mattress.
Chelsy Jones, 10, of Rocklea in Brisbane, weighs only 18 kilograms due to a condition known as Mucopolysaccharidosis type 4, or Morquio syndrome.
The condition means her body is unable to make enough of a specific enzyme that breaks down certain substances.
The build-up can affect her tissues, bones and major organs.
Just over a week ago, Chelsy underwent a fourth major surgery and without it she would have been paralysed.
“I couldn’t jump, I couldn’t even lift a milk carton, now I can do all that stuff,” Chelsy said.
But the operation nearly didn’t happen due to the 10-year-old’s anatomy making it impossible for her to lie on her front for the marathon spinal surgery.
Dr Geoff Askin said the shape of Chelsy’s chest meant surgeons were “never going to be able to put her on a commercially available operating table for eight to 10 hours”.
Along with Dr Askin, Queensland University of Technology’s Biomechanics and Spine Research Group performed a 3D scan of Chelsy’s body and handed it to mattress maker Sealy.
It took just a day and a half for three of Sealy’s best mattress engineers to hand-cut the foam and come up with the finished result.
“Basically, (it was) custom made and profiled just to provide the right amount of support without too much pressure, to make sure she could lay there for a long period of time,” Sealy Australia’s Daniel Green said.
The innovation could have game-changing ramifications for surgery involving people with different body issues.
“There are so many children with deformities requiring major surgery,” Dr Askin said.
Chelsy will now wear her brace for three months, but she’s remaining positive.
“I just think about all the presents,” she said.
“Who doesn’t like presents?”
