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The long way to home: Sophia’s story
November 7, 2025
When Sophia was born in April 2024, excited first-time parents Zoe and Ken could never have imagined that the first year of her life would be spent mainly in hospital.
They didn’t expect more questions than answers. Or that Sophia would need round-the-clock respiratory support and a tracheostomy at just four months old. And they never imagined that the day after Sophia’s surgery, Zoe would begin chemotherapy for triple-negative breast cancer.
“On the worst days of chemo, I used to FaceTime her,” Zoe recalled. “I could only hold my phone for about five minutes before I had to hang up. I didn’t even know if she knew I was her mum.”
Now home, with Sophia in their arms and Zoe in remission, the couple are taking a moment to breathe. Their bright, cheeky one-year-old, beams at her music therapist, waves at everyone and even plays the piano with her toes.
But getting here wasn’t easy, and the road ahead is still filled with uncertainty.
A series of unknowns
After bringing newborn Sophia home, Zoe and Ken’s concerns began.
“Our gut was screaming that something was wrong,” Zoe remembered. “She was trying to cry with all her might, but no sound was coming out. She was really slow at feeding, her colour was dusky and she was really sleepy.”
As Sophia’s condition worsened, Zoe and Ken rushed their baby girl to the emergency department. “I remember thinking she’s not going to make it through to the morning,” Ken recalled.
The next day, Sophia was transferred to Monash NICU, where she would spend much of the next 10 months.
For a long time, there were no answers, just a mix of emotions and fear. Eventually, genetic testing revealed Sophia had a group of rare hereditary conditions called congenital myasthenic syndromes (CMS), which affects neuromuscular function.
“It felt like we could finally name the monster that was plaguing our family,” said Ken.
For Zoe and Ken, limited research and the many variations of CMS mean that much about Sophia’s future remains uncertain.
Just weeks later, the family faced another devastating blow – Zoe was diagnosed with breast cancer. Her treatment began immediately, overlapping with Sophia’s complex care, hospital transfers and a tracheostomy to help her breathe.
A transition into something like normal
After months in hospital, the family faced a confronting reality: going home meant becoming full-time medical carers overnight.
That’s when Very Special Kids came into their lives and offered a solution – an emergency respite stay in family accommodation at the hospice.
Zoe, Ken and Sophia stayed here for five weeks. During that time, staff helped train specialised carers to support them and coached the couple on medical routines such as suctioning, feeding and how to care for Sophia’s complex medical needs at home.
More importantly, the family began to discover everyday joys.
Sophia went on a swing for the first time. She felt the wind in her hair, played music with Isaac, the music therapist, and painted her first picture.
“She cried when the wind touched her face – she wasn’t used to it,” said Zoe. “It was like she’d been institutionalised.”
Alongside these joyful firsts, Zoe and Ken had space to recover and rest. “It was like a real-life simulation. Very Special Kids helped us figure out what life was going to look like.”
A place where Sophia belongs
Now, the family regularly accesses respite care at Very Special Kids House – and while it’s a break for Zoe and Ken, it’s also an experience that Sophia loves.
“She’s older now, more social,” said Zoe. “She loves Play-Doh, going to the duck pond, music sessions and nail painting. The staff know what makes her happy. The more the nurses get to know her, the more comfortable we get leaving her here”.
Ken added, “It makes it a lot easier for us to trust Very Special Kids. We’ve got that confidence that when we drive off, they can handle a situation.”
The family now trusts the team like an extended family.
“We know she’s going to have fun, that she’ll be looked after by people who genuinely care for her,” said Ken.
Looking forward
Life at home is still complex. Sophia requires 24/7 care, equipment and trained carers day and night. Her day is filled with therapy, hospital appointments and routines that most families never need to consider. But it’s their family life – and it’s filled with love.
“Everything’s taught me a lot of perspective,” said Zoe. “It’s been really hard, but we’re lucky because we’re together and we can support each other”.
Recently, Very Special Kids gave them the confidence to do something they hadn’t done in a long time: go to a wedding and enjoy a dinner out with friends. “Stuff like that just makes you feel a bit more human,” Zoe reflected.
Zoe said it’s hard to put into words what the understanding and care has meant. “We didn’t know about Very Special Kids before this, but now I’d shout it from the rooftops.”
You can help us care for kids like Sophia by supporting the Piggy Bank Appeal during November.
Get involved by:
- Buying a very special piggy bank to help save your coins. Visit our online shop here or visit your local Commonwealth Bank branch
- Enjoying a meal out with friends and family. ALH Hotels will be donating $1 from every garlic bread sold during November – click here for participating venues
- Donate to help fill our piggy banks here.
