Emma now lives with myriad medical conditions; cerebral palsy, global development delay, scoliosis and epilepsy being on a list that her mum, Ashley, says, “goes on”.
“She’s completely non-verbal, completely non-mobile. She requires 24-hour care,” Ms Thorsen said.
“It was devastating because during our pregnancy we were told that everything was perfectly normal, that she was going to be a beautiful, healthy girl. That nothing was wrong, everything was fantastic.
“So, we were imagining this perfect life for her, and then we were told, she’s never going to walk, she’s never going to talk, she won’t live past five years old. To be told that, after you’ve been thinking all this time that you’re going to have the perfect life with her, was absolutely crushing and devastating.”
Now, with “day-to-day chang(ing) constantly”, life is far from what Ashley and her fiancé, Brad, envisioned it to be.
Emma requiring constant care means that the family of five have to live off one income stream, and rely on the assistance of NDIS support workers to provide the nine-year-old with the care she needs.
While they are constantly travelling to Melbourne for surgeries and doctor’s appointments, living in Seymour has given the family a much-needed lifeline.
“We do travel a lot, but living in Seymour actually is amazing because we have our therapists who are very local to us, and they even go to the school and do therapy there,” Ashley said.
“Seymour College has been phenomenal with Emma’s care and helping with Emma, making sure she fits in and gets the support she needs.
“The whole community is just amazing here. There’s so much love.”
Aside from the community’s generosity, it’s been Very Special Kids, Victoria’s only children’s respite centre, that has provided the family with invaluable support through Emma receiving 21 nights of care there each year.
“Their hospice is amazing, it doesn’t feel like a hospital or anything, it just feels like they’re on holiday,” Ashley said.
“They’ve got all different sensory rooms, like music rooms and lights, they’ve got arts and crafts, they’ve got their own gardens. Everything is just beautiful.”
This year, Emma’s face is that of the centre’s annual Christmas appeal.
“I cried (when I found out). At first, I thought she was just going to be one of the people they did a story on, and later it was clarified to me that, no, Emma’s the face, she’s the only one we’re doing the story on,” she said.
“I was just gobsmacked, I couldn’t believe my daughter’s being chosen for this.
“All the interviews were happening, and we had to send photos, all of this while doing spinal surgery with Emma. It was challenging, but so worth it because I’m that passionate about Very Special Kids and the love and support they’ve offered us.”
Among surgeries and doctor’s visits, Christmas is still special for Emma, who is able to enjoy the magical season with the help of the Melbourne centre.
And now, it’s the Seymour child’s very own face that fronts the Very Special Kids festive appeal.
