• Jana Edmondson surrounded by her friends at Coogee Primary—who are helping fundraise for a chair so she can play with them more easily. Photo by Jeremy Dixon

Like most kids in kindy Jana Edmondson likes hanging out with her classmates, painting, drawing and reading books.

Mum Verena says her five-year-old daughter is a “smart cookie and takes everything in like a sponge”. But when Jana was born doctors said she would never hear, see, walk, talk or eat after being diagnosed with cerebral palsy.

Ms Edmondson’s organs failed during pregnancy and Jana came into the world without any signs of life. Ms Edmondson woke from five days in coma to be told her daughter’s prognosis.

“To hear that she has cerebral palsy of the most severe level wasn’t easy, but this is how it is and you have to accept it,” Ms Edmondson told the Herald.

“By the end of the day she needs what every other child needs, love and support and that’s what we give her.

Challenging

“Every child is challenging if healthy or not, but Jana is now five years old and we are still changing nappies, feeding her and communicating with hands.”

The Coogee local says Jana has proved doctors wrong time and time again.

“Jana was on a nasogastric tube for the first two-and-half years of her life and doctors recommended a PEG (feeding through stomach) but we insisted that Jana can eat and after three weeks of tube-weaning she started to eat orally,” she says. “The doctors have never thought that this would be possible. Jana can also hold her head and upper body upright and that is uncommon for a child of her severity. According to her pediatrician she is the healthiest five year–old–child with cerebral palsy that he has ever seen.”

Ms Edmondson says a parent at Coogee primary was so taken by the feisty youngster she came up with an idea for an art night to raise money for a Jenx corner chair.

Costing around $1800 the chair sits on the floor and has shoulder strapping so Jana can tie herself and play with her friends. It also means Jana can hang out at her friends’ houses. The art night at the school on September 18 from 4pm-5.30pm will feature 150-odd pieces of art from the kindy and pre-primary kids. “The kids adore Jana and there is always somebody sitting next to her holding her hands. She adores her teachers and loves the attention she gets during the day,” Ms Edmondson says.

by BRENDAN FOSTER