Steve Waugh Foundation helping a little girl called Josie

12 December 2016

Josie is a 4 year old little girl who loves her family and her dog Wilma. The Penshurst loves to laugh, play, read stories, swing, swim and cuddle.

Josie also lives her life with a rare disease called FoxG1 which is a rare genetic mutation that affects her brain development and function. It means Josie is unable to walk or talk. She is tube fed, vision impaired, suffers from seizures, severe reflux, has increased susceptibility to illness, and with limited use of her hands, Josie struggles to communicate her most basic daily needs.

Canterbury has teamed up for a fourth year with the Steve Waugh Foundation who supports children and young adults affected by a rare disease by providing life changing support through a $20,000 grant to cover Josie’s physiotherapy costs for the next year, and a much needed swivel car seat.

Josie is one of up to 400,000 children, and up to 2 million Australians affected by a rare disease which impacts up to 1 in 10 people in our country. 

Her mum Sara says, “Our life over the past 4 years has been a steep learning curve involving a lot of doctors, hospital stays, therapists and new equipment, and of course lots of expenses we weren’t anticipating including a new house on 
a flat block of land! Thankfully we have met lots of wonderful people along the way who are only too willing to help our family.”
 
Josie’s physical disabilities are severe and as she gets older it is becoming more difficult to get her in and out of a standard car seat. The Carrot Swivel Seat is a specialised piece of equipment which helps safely transfer her in and out of the car without her parents and grandparent carers twisting at awkward angles and hurting their own backs. 
 
“Thank you to Canterbury for your generous contribution to the Steve Waugh Foundation and helping families like ours who have nowhere else to turn,” said Sara.