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Aaron prepares for next part of his life journey

AARON Payne was a typical active and energetic eight-year-old Aussie boy back in 2006.

However, a simple game of tag at Grandma Payne's house with sister Sheri and cousin Harry turned the Paynes' "normal" family life on its head and six and half years later, life for this family is about to be upended once again.

Aaron was running around and fell over, something every child is prone to - but this fall wasn't a case of a scraped knee, or even a broken bone. It had a more sinister and life-changing outcome.

His family was startled into emergency action as Aaron started shaking while on the ground.

Aaron was taken to Warwick Hospital, Toowoomba and then Brisbane and the family was told Aaron had childhood epilepsy with a prognosis that he would likely grow out of it in his teens.

But it was never as simple as hoped.

The following months saw Aaron's right leg continually "flicking" and the seizures continued and increased in number and severity despite the medication.

The same year after numerous visits to the Royal Children's Hospital in Brisbane and neurological appointments, the news came that Aaron had a rare neurological disease called Rasmussen's Encephalitis.

From a simple backyard fall, to epilepsy, to Rasmussen's Encephalitis, where patients experience intractable epileptic seizures, cognitive deficits and paralysis of half of the body, Aaron was the one in a million that the disease targets.

It usually only affects one cerebral hemisphere causing permanent damage to the cells of the brain and in Aaron's case, it is affecting the left hemisphere.

He will this week travel to Sydney to undergo a hemispherectomy, where surgeons will remove the affected left cerebral hemisphere - or the left half of Aaron's brain - in an effort to be seizure-free.

"I think I'm kind of looking forward to it," Aaron said.

"I'm looking forward to just walking or going down town with my friends and not having to worry.

"Just having freedom."

This operation always results in further weakness, with Aaron expected to experience greater weakness to the right side of his body (hemiparesis), loss of peripheral vision (hemianopia) and cognitive difficulties, including language deficits.

However, his desire to be seizure-free and the prognosis of life without surgery, further permanent damage and the fear of the disease crawling to the right hemisphere has led Aaron, the medical team and family to the conclusion that a hemispherectomy is the only answer.

Mum Kathy said despite the daily struggles Aaron has lived with, including random seizures, the now almost 15-year-old remains positive and focused on life to this point.

"He throws himself into everything he can with a big smile on his face," Mrs Payne said.

"He loves to be with his mates, relishes time with the gang at Neon Jaffa (Baptist Church Youth Group), plays a mean game of basketball, dodgeball, 500 and pool and is his dad John's able helper on the farm."

In telling Aaron's story the family wanted to acknowledge the incredible Warwick community.

"We are so grateful for the support we have received and continue to receive as Aaron heads off for this next part of his journey," Mrs Payne said.

Aaron is supremely optimistic, keen to be seizure-free and looking forward to having some independence.

The Payne family and those closest to them are very aware that the next few years will be difficult but they remain prayerful and hopeful that Aaron will have a way of communicating and a bright future.

Mr and Mrs Payne, both medical professionals in the community, also wanted to thank their clients and patients at Country Smiles Denture Clinic and Condamine Assist Counselling for their understanding.

"As we focus on Aaron's needs, we want to assure those within our community who require the assistance of Country Smiles Denture Clinic that service will continue with the help of some wonderful friends within the dental profession and staff," Mrs Payne said.

Topics:  community disease epilepsy health warwick hospital



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