Tia Clayton and Kye Schulze with their four-year-old son Koda Schulze enjoying a special day at the Alstonville Showground on Saturday.
Tia Clayton and Kye Schulze with their four-year-old son Koda Schulze enjoying a special day at the Alstonville Showground on Saturday. Doug Eaton

Koda's remarkable journey

ONE four-year-old boy was having a great time at Koda's Concert at the Alstonville Showground on Saturday - and remarkably that was Koda himself.

The smile barely left his face as friends and the community gathered in a fundraiser for the boy who was born 15 weeks premature, weighing just 770g - less than 2lb.

As the Koda's Concert website explains, it may not look like it but this little bloke has been through more in his short life than most would in a lifetime; and he still manages to smile.

Koda Schulze spent more than four months in the neonatal intensive care unit at the Mater Mothers' Hospital in Brisbane, then the next two years on continuous sub-nasal oxygen, 24 hours a day.

At the age of two he was diagnosed with 1p36 deletion syndrome, a rare chromosomal deletion causing developmental delay, severe speech delay, delayed growth and hypotonia (muscle weakness).

As a result he is not yet walking.

His parents said he was trying very hard, but for now he was a professional "bum shuffler".

With various other health issues, it hasn't been easy for Koda.

He also has chronic lung disease, recurrent kidney stones, fused knuckles, short-sightedness, eczema and dozens of scars from multiple medical procedures.

Koda's dad and mum are Kye Schulze and Tia Clayton, of Ballina.

Ms Clayton had just turned 20 when she gave birth to Koda.

"I cried every day for two weeks," she said.

But as Koda developed, they gradually started to realise how rewarding it could be raising a child with special needs.

"His difficulties have made Koda the kid he is," Ms Clayton said.

"It's amazing how he copes with what he has been through and because of that you appreciate him so much more."

The couple faced big expenses when Koda was in hospital in Brisbane and ongoing costs include regular appointments with pediatricians and other specialists, physiotherapy and now speech therapy

They hope he can start school next year, probably at Southern Cross K-12, which has a special-needs unit.

Koda's Concert on Saturday included jumping castles, face painting, ball pits, rides, market stalls, an auction and fireworks, plus live music, a car display, tae kwon do demonstrations and security dog patrols.

"We've had amazing support," Ms Clayton said.

Her friend Tanya Coggan, who organised the event, said it had been a great day but the rain may have kept some people away.

Perhaps Ms Clayton sums up her feelings best on the Koda's Concert website.

"Despite what Koda has been through, he is a beautiful, fun and loving boy, who continues to amaze us.

"I can proudly say he's my motivation to get up and keep going every day. My role model and my inspiration is a four-year-old boy, my son."

Anyone wanting to help Koda can donate to Commonwealth Bank account name Koda Ryley Schulze, BSB 062657, A/c No 10154024.



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