Little fighter needs help
Chair is a lifeline for little Ethan
FOR two hours at a time, Ethan Gosden has to sit in his special feeding chair.
His mum Kirsty Bateup refers to it as his “safe place” often opting to sleep in it as it is where he feels most comfortable.
The Caloundra boy spends so much time in this chair as a result of the many seizures due to an extremely rare brain disease, Periventricular Nodular Heterotopia.
He is one of only four males in the world to have the disease.
As he’s grown, his chair is fast becoming too small and too uncomfortable for him to spend much of his day in.
Special friends of the family have seen their struggle and have now opened a GoFundMe to assist the family.
Ms Bateup said she couldn’t be more thankful.
“My main support is Tania Bailey,” she said.
“She was diagnosed with cancer and unfortunately it has relapsed.
“She asked another close friend, Ken Smileland, to help us out if she couldn’t.
“We are so blessed to have them in our life – when you’re around them you just want to be a better person .”
It’s been a long journey for the family, who have spent all of the two-years-old’s life in and out of hospital appointments.
“The doctors appointments and multiple hospital stays has put a big strain on our family,” she said.
“Hubby is self employed, so if he doesn’t work we have no money coming in.”
Ms Bateup says she just wants the best quality of life for her son and a new chair is key to this.
“The chair comes in at just under $10,000,” she said.
“Which makes it
NEVER GIVING UP: A young Ethan Gosden enjoying a smile with his parents.