Currimundi toddler Ethan Gosden's life has dramatically changed since community donations paid for a specialised support chair.
Currimundi toddler Ethan Gosden's life has dramatically changed since community donations paid for a specialised support chair. Contibuted

Generosity brightens brave Ethan's world

COAST toddler Ethan Gosden defied doctors' predictions when he lived past his second birthday.

Now three, Ethan's life has been dramatically enhanced by community generosity which has also changed his family's entire world.

The Daily caught up with Ethan and his mum Kirsty Bateup last year when a plea for public help resulted in donations which paid for a $10,000 mobility chair to support Ethan through symptoms of his rare genetic disorder, periventricular nodular heterotopia.

Ethan had previously used a static high chair when being fed through a line directly into his stomach on a two-hourly basis.

His daily routine requires him to spend two hours in a chair being fed before he can get out for two hours.

Then he gets back in the chair for another two-hour feed in a rotation that continues from when he wakes until he goes to bed at night.

His other medical issues include regular seizures which can come in clusters lasting up to an hour.

 

The Daily's coverage of Ethan Gosden's family's push to afford a new feeding chair for him in November 2017.
The Daily's coverage of Ethan Gosden's family's push to afford a new feeding chair for him in November 2017. Contributed

Miss Bateup said getting Ethan out in the community had been much easier since receiving the new chair late last year.

"It helps him maintain a routine and consistency," Miss Bateup said.

When out of his chair Ethan runs and climbs and is learning to communicate through signing.

Weekly speech and therapy sessions are also paying off.

"He can throw a tantrum like a three-year-old," Miss Bateup said.

"It's really cute.

"I can't get cranky at him."

Such progress gives Miss Bateup, her partner Andrew Gosden and their family strength in the face of repeated set backs, including the recent discovery that Ethan's older brother Noah, 4, also has a genetic disorder causing regular seizures.

"I haven't come to terms with it yet and fitting it all in with Ethan's care," Miss Bateup said.

Miss Bateup regularly details the ups and downs of her son's medical journey on a Facebook page Fight for Ethan.

It has attracted more than 2300 followers since being set up by a friend.

"Ethan has opened my eyes up to a completely different world and I am a much better person for it and I want to share that with others."

She said a mother from Sydney who had a five-year-old daughter with a similar diagnosis to Ethan had reached out to her in the past week for support and someone to talk with.

"That wouldn't have happened if it wasn't for Ethan's page."

Miss Bateup said her family's focus was on giving Ethan the best quality of life they could.

"He has all of this medical stuff going on... but he is still just a kid and he deserves the opportunity to be just a kid."



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