ISLA’S BRAVE BATTLE

BRIGHT, bubbly and brave Hobart four-year-old Isla Kapeller will soon undergo a “heartbreaking” irreversible procedure to disconnect the right hemisphere of her brain.

The “beautiful young girl” who loves the Disney film Frozen and watches it most nights before bed, suffers an extremely rare condition called Rasmussen’s Encephalitis.

According to her father Jimmy, only 12 others in Australia and 500 in the world have the condition.

Isla was diagnosed only three months ago after her first seizure early last year.

The seizure wasn’t deemed too serious by doctors at the time and an initial diagnosis was epilepsy.

Since then she has suffered an increasing number of seizures each month with 56 in June this year.

After numerous MRI, EEG and PET scans and a lumbar puncture, Isla received her final diagnosis in April.

There is no cure for the disease, which inflames and progressively eats away at brain cells. She will travel to Melbourne in September with her dad, mother Karissa Young and one-year-old sister Tilly, to undergo a hemispherectomy.

Mr Kapeller said the surgery would permanently impair Isla’s vision and partially paralyse the left side of her body, but was the only treatment for a disease which could have far worse consequences if left untreated.

“That’s the road we’re heading down now,” Mr Kapeller said.

“We’re waiting for the next stage of this disease to hit and that’s the scary part. The unknown.”

Mr Kapeller said his “happy girl” was too young to understand the consequences of the surgery.

“That’s the sad part. We’re going to put her to sleep for a 13-hour operation and she’s going to wake up with irreversible impairments.”

The family has received support from another Tasmanian family that had been through the same thing and reached out. “It was the most beautiful thing anyone could ever do,” Mr Kapeller said. He said his family felt lucky for Isla’s relatively quick diagnosis time of 16 months, given the small number of cases worldwide.

“As heartbreaking as it is, the worst news we ever got was also the best news, because we know what we’re dealing with.”

The family wants to raise awareness and “get the diagnosis time down for the next kid”.

A GoFundMe page called Little Isla’s Journey was created for the family as Mr Kapeller and Mrs Young will not be able to work while they help Isla adjust post-surgery.