Little Bonnie sits beaming as her older sisters, Iyah-Rose, eight, and Kahli, six, tickle her and shower her with kisses.
As Lara Williams, 37, and her husband David, 38, look on, their eyes fill with tears of joy recalling how a year ago Bonnie’s arrival almost ended in tragedy.
On December 13 Lara gave birth in the family’s lounge room in Hervey Bay, Queensland. “It was such a peaceful waterbirth with two midwives present. I caught her and then we all moved into the family bed,” Lara tells Woman’s Day.
But the new baby bliss was shattered three days later when baby Bonnie began to have what appeared to be fits and was rushed to the local hospital.
Unable to deal with the complex nature of Bonnie’s needs, Lara and the baby were taken by Royal Flying Doctor Service to the Royal Children’s Hospital in Brisbane where she was put in an incubator.
“I knew something wasn’t right. I don’t think I took one breath during the flight,” Lara remembers.
Little Bonnie is treasured by her big sisters, Iyah-Rose and Kahli, and parents Lara and David.
(Image: Supplied.)The neurology team did a barrage of tests with the EEG revealing extra activity in one part of Bonnie’s brain. She was put on medication to stop the fits, and on Christmas Eve they were able to leave the hospital, hoping the seizures would stop.
David had frantically packed up the Christmas presents from home he could sneak into the car and the family were reunited at Lara’s sister’s house in Brisbane, hoping to be able to enjoy Christmas.
But on Christmas morning as Iyah-Rose and Kahli excitedly opened their presents, Bonnie started having seizures again.
The newborn was rushed back to hospital where Lara spent a lonely 24 hours in a chair, holding vigil beside her.
“We were still establishing our breastfeeding and recovering from significant postpartum bleeding. I was in a lot of physical and emotional pain, trying to fight mastitis and tongue-tie and support her the best way possible,” she says, remembering the heartbreaking time.
COVID restrictions made it hard for David and the girls to visit. Then, with no diagnosis doctors sent Bonnie home while waiting for test results.
“Someone was constantly watching her,” Lara recalls of life back at home. “Baby watch and sister cuddles turned into seizure watch.
“David and I were both semi-awake 24/7. I don’t think I could have slept if I tried.”
Little Bonnie was hospitalised soon after birth.
(Image: Supplied.)Late January Bonnie developed West syndrome infantile spasms.
“She went from twitching to crunching. Her whole body would crunch. She could do anything from 10 to 12 crunches in two to five minutes and about 20 times a day.
“I knew at that point we were dealing with infantile spasms and action needed to be taken quickly and harshly as it’s hugely detrimental.”
She was prescribed a high dose of steroids to attempt to reboot her tiny brain.
“I tried to bargain with God,” Lara admits. “The spasms were horrific. She blew up on the steroids. Her cheeks got so fat, and she was ravenous.”
The family decided to prepare for the worst.
“We booked her in to be baptised because we didn’t know if she’d make it or not. She was so unwell, we didn’t know what the future held.”
Lara and Bonnie were transported by the Royal Flying Doctor Service.
(Image: Supplied.)After three months of waiting they got the final test results, which found Bonnie had a rare and complex genetic condition called STXBP1, which is an interruption to her chromosome nine.
“It was devastating. It felt like the carpet had been ripped out from underneath us,” Lara cries.
But having only been discovered in 2008, doctors had no further information or answers for the family.
Extraordinary: Inspiring Stories Of Children Living And Loving Beyond The Label is released on Amazon as an ebook on December 20.
Bonnie is the youngest of only about 15 people in Australia with the condition, which causes epilepsy and developmental issues, affecting each child in different ways and to different degrees.
Research shows her lifespan will likely be shortened.
“Doctors said Bonnie would write her own story on it,” Lara says. “All we can do is be here today. We don’t know what tomorrow holds.”
Through their journey Lara met other inspirational children and their families and wrote a book celebrating them.
“It’s also nice to know they’ve survived the initial stages and mostly just got on with life.”
While Bonnie’s future remains uncertain, and she is not meeting the same milestones as other children her age, medication is keeping her seizure-free. And she’s the light of her family’s life.
“She’s a little miracle,” Lara beams. “She wants to smile and be with people. She’s like sunshine.”
Extraordinary: Inspiring Stories Of Children Living And Loving Beyond The Label is released on Amazon as an ebook on December 20.
Bonnie’s big sisters loved her even before she arrived.
(Image: Supplied.)