Mahli Sobarzo-Dynak, 13, suffers frequent seizures after Rasmussen’s Encephalitis diagnosis

A bubbly Melbourne teenager has been diagnosed with a rare condition which causes frequent seizures and impacts her ability to walk.

Mahli Sobarzo-Dynak (left) and her mother Kelly Dynak. Mahli has been diagnosed with a rare disease that causes frequent seizures. Picture: Supplied

A “bright and bubbly” Melbourne teenager has been left “isolated” and “scared to sleep” after being struck with a rare condition which causes relentless night seizures and progressive brain damage.

Mahli Sobarzo-Dynak, 13, was diagnosed with Rasmussen’s Encephalitis — a rare drug-resistant disease which has both severe physical and cognitive effects, causing mental decline and regular seizures.

It has also impacted her ability to walk, forcing her into a wheelchair.

Mahli Sobarzo-Dynak (left) and her mother Kelly Dynak. Mahli has been diagnosed with a rare disease that causes frequent seizures. Picture: Supplied

While treatments can reduce the intensity of the seizures the only known surgery to stop them requires disconnecting the affected hemisphere of the brain.

Her mother Kelly Dynak said Mahli’s mental health has also deteriorated significantly.

“She doesn’t have the social aspect of school anymore, so she is isolated and not seeing her friends has really affected her,” she said.

“She is embarrassed to be seen in her wheelchair in public because she has become so withdrawn.

“I’m exhausted. I try to put on a brave face for Mahli but behind closed doors I am breaking down.

“We are just surviving.”

Kelly Dynak (left) and her daughter Mahli, 13, who has been diagnosed with Rasmussen's Encephalitis. Picture: Supplied

An online fundraiser has been launched to help Mahli access treatments and equipment like a seizure-safe bed, while also alleviating some of the financial pressure off her mother.

Ms Dynak said a seizure-safe bed would provide significant help.

“Having a bed where movement sets off an alarm would give her (Mahli) some independence and allow me to be able to sleep at night,” she said.

Rasmussen’s was known to affect children under 15.

More information on Rasmussen’s can be found here.