100 seizures a day: Family’s heartbreak over baby’s rare battle

An ultra-rare form of epilepsy has robbed a smiley Logan baby of many firsts as his parents are forced to watch him battle through up to 100 seizures per day.

An ultra-rare form of epilepsy has robbed a smiley Logan baby of many firsts as his parents watch him battle through up to 100 seizures per day.

Simon and Chloe Zapantis said their hearts break every time KCNT1-related epilepsy takes control of 11-month-old Levi.

The little boy from Heritage Park was healthy and happy until he began showing signs of the seizure disorder at four-and-half-months old.

His future is shrouded in uncertainty as there’s only five other known cases in Australia.

“There is so much unknown so we’re grieving what we may not be able to share with Levi,” Mr Zapantis said.

“A lot of kids with this condition end up being PEG fed.

“The expectation is that they will never walk, talk or function by themselves.”

Simon and Chloe Zapantis with 6-year-old Teleah and 10-month-old Levi at their Heritage Park home. Picture: Richard Walker

Levi was hospital-bound for almost three months from February as doctors tried to gain some control for him.

While he is now back home with his parents and big sister Teleah, 6, the baby boy is admitted to hospital every time his seizures begin to skyrocket.

A ketogenic diet and intensive therapy has provided Levi with some relief but the National Disability Insurance Scheme only funds so much treatment.

Friends, family and strangers have raised almost $25,000 to fund further treatment since Mr Zapantis’ workmate in the police force Simon Holt launched a GoFundMe last weekend.
Mr Holt said he was shocked at the overwhelming response to his fundraiser which has a target of $90,000.

“I wanted to do something to help because I know that Zappa would do the same for me - he would give someone the shirt off his back,” Mr Holt said of his workmate.

“The past few months have been extremely hard for his family as Levi needs 24/7 care and observation.

“It’s been physically, emotionally and mentally tiring.”

Simon and Chloe Zapantis with 6-year-old Teleah and 10-month-old Levi. Picture: Richard Walker

Mrs Zapantis said money raised would help plug the gap in funding for weekly therapy and specialised equipment including a stroller and car seat for Levi who is unable to sit up or crawl.

The genetic epilepsy condition causes low muscle tone and can also bring vision impairment, heart arrhythmia, low bone density and reduced life expectancy.

The seizures have so far been the most confronting symptom for Levi.

Mrs Zapantis said the way seizures presented varied and included leg jerking, twitching, choking and eye deviation.

“When you’re watching him (during a seizure), it breaks your heart over and over again,” she said.

“The scariest seizures are the ones where he holds his breath, sometimes until he turns blue.

“There is nothing you can do and you just have to wait and hope that he comes out of it and starts breathing again.”

Mrs Zapantis said Levi slept between seizures “on the bad days”.

“On the good days he is the happiest, most chilled little baby,” she said.

“He gives you these smiles that make you melt.”

Donations can be made at the GoFundMe page.