The heartbreaking reason Ethan can't stop crying or laughing

FAMILY'S PLIGHT: Two-year-old Buderim boy Ethan Gosden suffers from an extremely rare brain disease, and needs support.
FAMILY'S PLIGHT: Two-year-old Buderim boy Ethan Gosden suffers from an extremely rare brain disease, and needs support. Go Fund Me / Ken Malin

YOU MIGHT think this little two-year-old is laughing with glee, or crying from hunger.

But the reality behind two-year-old Ethan Gosden's emotions is a very rare brain disease which causes him to suffer from seizures every two hours.

Extremely rare and vicious in nature, Periventricular Nodular Heterotopia renders its host unable to feed themselves and spend most of their lives strapped to a chair, and was diagnosed in the Buderim boy after birth.

The condition stems from a stunt in growth of the brain at an early age.

In Ethan's case, the nerve cells did not migrate properly during early development of his fetal brain.

A cluster of lesions formed deep in the left side of his brain, causing him to suffer from dacrystis seizures, sparking the crying or laughing response.

But little Ethan is far from happy.

Previously, Mum Kirsty said the seizures began the moment Ethan was born and she knew it wasn't "normal".

A day in his life means eight hours, sometimes more, being secured and supervised in a high chair, eating his meals in the form of liquid through a tube and constantly forced to sit upright or at no more than a 45-degree angle.

This is to prevent him from inhaling his food.

But the growing boy is getting too big for his current eating chair; his arms and legs overhang the sides at uncomfortable angles and the chair will soon not be able support his needs.

The solution lies in the form of a hefty $10,000 bill, slapped down in the hands of Ethan's parents.

An upgraded, fully functional chair would improve Ethan's quality of life immensely - allowing him to be properly supported while he eats, interacts and sleeps.

The chair means he will also be able to be transported outside with ease.

Close family friend of the Gosden's, Ken Malin, created a Go Fund Me page for the coast community to help pay for the specialised chair.

Mr Malin said the chair needed to be bought as soon as possible, but assistance from the government could take up to a year.

"The relevant government agents (Disability Support Queensland) are aware of the situation and said it would take 12 months for the funding to be approved," he said.

"Having witnessed the Gosden family constantly hitting brick walls with government agencies, this time frame could end up being a lot longer or worse, not (approved) at all.

"I have a special bond with Ethan and just want to help the little fella out.

"I appreciate this is a massive ask but this feeding chair is vital - any donation is so greatly appreciated - and all funds will go directly to the Gosden family.

Topics:  children chronic disease editors picks ethan gosden fundraiser go fund me kids

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