Tia Bondarczuk wakes up every morning wondering if her four-year-old daughter Gracie will remember who she is.
The preschooler, from Bunbury in Western Australia, was “perfectly happy and healthy” before she was given her routine four-year-old vaccinations in February.
But the day after the injections he fell ill at school, his temperature rose and he had a febrile seizure: physically fit young children can suffer from a high fever.
However, febrile seizures are not an unusual side effect of vaccines, and Tia and her doctors are baffled by Gracie’s continued deterioration in health.
He has multiple seizures a day and no one can tell him why.
Four-year-old Gracie Bondarczuk, pictured with her stepdad Alan and mom Tia, often forgets who she is, who they are and where she is, leaving her terrified.
Gracie was a “normal, healthy” preschooler before receiving her four-year-old bumps in February.
Speaking to FEMAIL, Gracie’s distraught mother said there are times when her daughter just “goes blank”.
To make matters worse, the family’s home was also recently devastated by a cyclone that destroyed most of their belongings, including the toys Tia used to regain her daughter’s memory.
“She looks at me and has no idea who I am or where she is,” Tia said through tears.
‘She screams and hits me. She screams “I don’t know what mom is.”
The seizures, which seem to erase the young man’s memory, can appear at any time.
‘I don’t know if she’ll wake up and know me or not. It’s really heartbreaking,” Tia said.
Episodes can also occur when the family, which includes Gracie’s stepfather Alan and her two stepsisters, play together.
“One day we were playing… and his face went blank and then he got really scared,” Tia said.
“She had no idea who we were or where she was.”
Tia shared a video with FEMAIL showing the young man about 40 minutes after a major seizure in the car.
Now the girl is in and out of the hospital and is often anxious and scared after forgetting who she is, where she is and who her family is.
“Before this, she was screaming wanting to know who we were,” the mother said before admitting that she is too devastated by that video to share it.
But the video he decided to share is heartbreaking.
It showed the usually cheerful four-year-old sitting in her booster seat, staring wide-eyed and terrified at her parents as they lulled her to sleep in the front seat.
She doesn’t speak but seems extremely cautious.
Alan asks if he knows where they are. Gracie looks out the window and shakes her head even though she’s been down the road countless times.
“I’m just terrified that something serious is happening every time she has a seizure and forgets,” Tia said.
The mother went to the hospital for scans or to ask them to follow up on Gracie’s condition, but was told “she is on the waiting list”.
To make matters worse, the family had to abandon their home for good after it was destroyed by a cyclone.
“A doctor told me it could be something from four years ago, I was angry so I yelled at him and he backed away. Of course it’s not a normal thing for a four-year-old,” Tia said.
The distraught mother said she and her partner have had to juggle full-time work and caring for Gracie, who has been unable to attend daycare since she began having seizures.
“It has been very mentally exhausting and has taken its toll on him, especially when he can’t remember anything. “I’ve always been a ‘mom’ and now that’s taken away from me every day,” he said.
Tia and her partner have been working hard to get another rental, which they will move into next week.
“We’ve been in crisis housing and I think this is making it very difficult for Gracie because it doesn’t feel like home… when she forgets, there’s nothing here to help her remember again,” Tia said.
Every time the young woman ends up in the hospital, doctors send her home and ask her mother to “document everything.”
Amnesia lasts between 30 minutes and half a day, but seems to get worse over time.
Tia was able to rescue a photo album from the rubble of her house and goes through it with her daughter to try to help her remember who she is.
Gracie also began developing ticks as a result of her seizures.
‘His ticks have become so bad on his legs that he can barely stand. They are strong and they throw her to the ground,” she said, adding that she has trouble swallowing.
‘She swallows now. You can see it in the videos, her swallowing. She chokes on food and I am afraid that she will choke at any moment.”
Tia managed to save her baby album and uses it to remind Gracie who she is.
Tia said her daughter is turning into an angry and frustrated child as she struggles to communicate or use her body.
“She screams and lashes out, she’s scared,” Tia said.
Tia has been spending thousands of dollars doing her own tests and investing in sensory appointments while she waits for Gracie’s condition to become urgent enough for doctors to see her at the hospital.
“Every time we go in they send me home to document it,” he said.
“At first they told me she would be a little off for a few weeks, but it’s been months and it’s getting worse.”
she has started a Go finance me to help pay medical bills.
“We both work full time and have always gotten by; with this money we are still just getting by, but we know we have money set aside to pay for whatever she needs,” Tia said.
The family will fill your room with items that will trigger memories when you have seizures and forget who you are.
