Lit­tle fighter needs help

Chair is a life­line for lit­tle Ethan

Sunshine Coast Daily - Caloundra Weekly - - NEWS - Jor­gia White jor­gia.white@sc­news.com.au

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

PHOTO: TANYA BAYLY

NEVER GIV­ING UP: A young Ethan Gos­den en­joy­ing a smile with his par­ents.

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