Four years after doctors said she probably wouldn’t live, let alone walk, Veronika Davie took her first independent steps. Here, her mother Kylee shares her story.
Veronika’s struggle to stay alive began before she was even born.
Sometime during her last few days in the womb, Veronika suffered a massive stroke, so severe it would have killed most adults instantly.
In pictures: Veronika’s amazing life
Somehow, she survived, but doctors warned Kylee the tiny baby might not live through her own birth.
“It was terrifying,” Veronika’s mother Kylee says. “There were about 20 doctors in the room when I gave birth.
“We didn’t know if she would live, and if she did, what state she’d be in.”
Again, Veronika survived — but her ordeal was far from over.
Minutes after her birth, she was diagnosed with Down syndrome. A short time later a routine test revealed she had an 8mm hole in her heart and would need open heart surgery.
At one week old, an MRI revealed the extent of her in-utero stroke. Her prognosis was devastating.
“They said she had permanent brain injuries, and that she would never walk,” Kylee says. “Worse, because of her Down syndrome and heart condition, they had no idea if she would even live, and if she did, for how long.”
It was news that would upset any parent, but after 14 days spent sobbing, Kylee simply refused to accept it.
“I cried for two weeks and then one day I just decided that it wasn’t going to be like that,” Kylee says. “I decided that Veronika was going to survive and thrive and one day I would walk back in there and say ‘I told you so’.
“All the doctors said ‘Oh, we’ll look forward to that’ but you could see they were thinking ‘yeah right’.”
Despite Kylee’s positive thinking, another diagnosis came four weeks before Veronika’s first birthday — she had cerebral palsy, caused by her in-utero stroke.
“No one could help us,” Kylee says. “They’d never come across the combination of Down syndrome and cerebral palsy before. They just didn’t know how to treat Veronika, what her progress would be like. It was very stressful.”
The uncertainty was hard to cope with, but Kylee says she and her husband have never wavered in their determination to give Veronika the life they feel she deserves.
Over the years this has involved many thousands of dollars, up to six specialist appointments a week, and a lot less time and resources for their other children, sons Jordan, 10, and Jakob, seven.
“Financially it is a huge burden,” she says. “When I was pregnant with Veronika, we were building our dream home. We were going to have a healthy child and I was going to go back to work so we could afford our perfect lifestyle.
“Then she was born and I was told that I was going to have to be her full-time carer and I would never work again and I was like ‘But we’ve just bought a house. We need to be able to pay the mortgage’.
“Our kids don’t necessarily go without anything, but money is tight. My mindset is that at the end of the day she shouldn’t be here and she’s fought to stay alive for a reason and so we’ve got to give her every opportunity we can.”
In 2011, the Davie family had a breakthrough. Just before Christmas, Veronika was fitted for her very own walker. Finally, she was mobile.
Last week, things got even better. After four years, three months and two weeks of gruelling therapy, Veronika took her first independent steps.
Shaky as they were, those steps represented a small miracle for Kylee.
“It was so very exciting because it’s something we were told she’d never do,” she says.
Veronika is now getting ready to start school. In February, she will join her older brothers at their local Tasmanian primary school, realising another of Kylee’s big goals.
In pictures: Veronika’s amazing life
“When she was born and they said she would never walk, the first thing that came to me was that she wouldn’t be able to go to school with her big brothers because it’s on the side of a hill and there are stairs everywhere,” Kylee says.
“She is actually going to go to that school next year. Our goal was that she would go to school with her brothers and that she would walk into school on the first day.
“She’ll get there. She’s the most amazing person and I wouldn’t change her for the world because she is so awesome just the way she is.”
To read more about Veronika’s amazing journey, visit Veronika and Kylee’s blog or their Facebook page.
We would like to thank The Wiggles, who have arranged concert tickets and a meet and greet for Veronika and her brothers when their upcoming national tour visits Tasmania. For more information on the tour visit The Wiggles website.
Video: Watch Veronika’s first steps
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