Little Isla’s journey with rare disease: Family opens up on ‘heartbreaking’ irreversible procedure

Claremont girl Isla Kapeller may seem like an ordinary, happy child. But she suffers an incredibly rare condition that caused her to have 56 seizures last month. Now her parents must make a heartbreaking decision about her future. READ ISLA’S STORY >>

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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” from Claremont, who loves the Disney film Frozen and watches it most nights before bed, suffers an extremely rare condition called Rasmussens 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 her initial diagnosis was epilepsy.

Since then she has suffered an increasing number of seizures each month with one in May, seven in November and 25 in December.

In April this year, after numerous MRI, EEG and PET scans and a lumbar puncture, Isla received her final diagnosis.

Tilly, 1, Jimmy and Isla Kapeller 4 with Karissa Young. Isla will travel to Melbourne in September to have a major operation. Picture: CHRIS KIDD

There is no cure for the disease, which inflames and progressively eats away at brain cells.

Last month Isla suffered 56 seizures.

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 the disease which could have far worse consequences if left untreated including permanent brain damage, weakness and the deterioration of her fine motor skills.

“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.”

Karissa Young and her daughter Isla Kapeller 4 of Claremont will travel to Melbourne in September to have a major operation. Picture: CHRIS KIDD

The family has been supported by a family in Northern Tasmania who have been through the same thing.

“They found out about us and reached out and it was the most beautiful thing anyone could ever do it.”

Mr Kapeller said the family sat them down and told them what they needed to do.

“We respected that, because they went through seven years of misery and we don’t want to play roulette with our kid.

“We just want to get in and do what’s medically right.”

Mr Kapeller said his family felt lucky for Isla’s relatively quick diagnosis time of 16 months, given the insignificant number of documented 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 now wants to raise awareness for Rasmussens Encephalitis and “get the diagnosis time down for the next kid”.

A GoFundMe page has been created for the family as Mr Kapeller and Mrs Young will not be able to work as they help Isla adjust post surgery and care for Tilly.

“We’ll get through it because we have to,” Mr Kapeller said.

To donate go to: Little Isla’s Journey