Yahoo Lifestyle Aussie girl, 4, who suffers multiple seizures per day, forgets family after collapsing at kindy
Tia Bondarczuk says her daughter Gracie's symptoms are very confronting. The ordeal has been made worse by the family's home recently being destroyed by a cyclone.
An Aussie mother has described her heartbreak at having to “repeatedly introduce herself” to her four-year-old daughter months after the little girl suffered a seizure while at school. Tia Bondarczuk said she discovered her daughter Gracie lying on the floor of her kindy classroom in February with froth coming down the side of her mouth.
“We immediately took her to hospital in Bunbury and they took us straight through to the resuscitation bay,” the 24-year-old, from the southwest region of Western Australia, told Yahoo News Australia.
“They took her temperature, which was over 41 degrees, and they were not too sure she was going to be ok. She was completely unconscious.”
'Lucky she didn't die'
Fortunately, doctors managed to save Gracie who’d suffered a febrile convulsion, which is a fit or seizure in young children caused by a high fever. The incident happened a day after the little girl had received her four-year-old vaccinations.
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“The paediatrician afterwards said we were really lucky she didn’t die from the temperature itself, or from the froth coming out of her mouth because she could have choked to death,” Bondarczuk explained.
After two nights in hospital, Gracie was discharged with doctors telling the family she would be a “bit strange for the next couple of weeks” but that would be it. Yet three months later, the four-year-old is suffering multiple seizures a day which cause her to forget who her family is.
‘I don’t know what mummy is’
“Gracie has what they call grand mal seizures — sometimes four times a day — where she becomes completely unconscious or stares off into the wall,” Bondarczuk said.
While the mother describes these episodes as “confronting” and hard to manage, what’s worse is the memory loss that follows. Especially when Gracie has a seizure in her sleep and wakes up not knowing where she is.
“She just forgets that we’re mum and dad a lot of the days, so I have to introduce myself a lot in the mornings,” the mother-of-one explained. “It’s really hard to see your daughter not knowing who you are and I can’t imagine what she feels.”
During a recent episode, the family were playing peekaboo underneath a rug when Gracie “suddenly went completely quiet and then started freaking out”. “She had no idea who we were and started attacking me,” Bondarczuk said.
“She actually punched me in the face, but I can understand that if you didn't know who you are or who anyone else is, I guess it's a survival instinct — and she just kept screaming, ‘Who am I? Who are you? I don't know what mummy is.’
The waiting game
Since February, the family has been desperately seeking further medical help for Gracie’s deteriorating condition. But even with a referral to Perth Children’s Hospital, the priority waitlist is backed up until the end of the year.
“They said, ‘Just wait’, but being told to wait is like the worst thing ever when you feel like time is against you,” Bondarczuk said.
In the meantime, Gracie is being sent for tests — many of which are not covered by Medicare or private health insurance — and sensory treatment because she’s also forgetting things like how to eat, use utensils and hold a pencil as well as suffering face and leg tics and walking with a limp.
“The assessments are over $1,000 to $3,000 each and there are about six of them,” the mother explained, adding she’s had to take a lot of unpaid time off work to care for her daughter.
“I am trying to get the best help for her that I can, but I can’t afford the scans that they want to do and I’m having to choose between paying bills and my daughter’s health. That’s the worst part.”
It's this financial stress and heartache that's led Bondarczuk to launch a GoFundMe page to raise money for medical bills.
“We’ve been trying to work through it as a family, but it’s been extremely overwhelming and difficult,” she wrote online, adding that any contribution would be “immensely appreciated”.
Cyclone destroys family home
On top of everything, the family suffered the unthinkable on Friday when their unit in Withers was destroyed by the cyclone that tore through Bunbury. Fortunately, no one was home at the time.
“I had left just three minutes before,” Bondarczuk said. “I had been standing where the big tree that fell on our complex was. People were searching for us thinking that I was underneath. That’s how close of time it was.”
The family lost everything to the damage or subsequent looters, except for one thing the 24-year-old mother was able to save. “I managed to get my daughter’s photo album,” she said. “Because that’s the only thing I show her when she forgets who she is.”
Despite the destruction of the family property, all Bondarczuk cares about is making sure her daughter is ok. “I can replace a house,” she said. “But I can’t replace her.”
With the family now homeless and waiting for a rental application to go through, Gracie is now living with her biological father while Bondarczuk and her partner sleep on friends’ floors.
You can help support the family by donating to their GoFundMe page.
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