Parenting surprises
Parenting has been full of surprises for Rachael. Already a busy mum to two girls, she fell pregnant again in 2022, never imagining the journey that lay ahead.
When Rachael discovered her third child, Ebony, had Down syndrome, it came as a surprise. But just a year later, when she fell pregnant with her fourth, Rachael and her partner Karim were faced with an even bigger shock: Ayana also had Down syndrome.
“It hadn’t even crossed my mind that she may have Down syndrome too,” Rachael explains.
While Ebony had faced her own heart challenges when she was born, it was Ayana who “got the bad side of the stick”, Rachael explains.
“She had a severe heart defect. Most people in the Down syndrome community would know it as AVSD – basically, a really large hole in the heart.”
Doctors had initially planned surgery at a later age but quickly realised that at just two months old, Ayana’s heart condition was deteriorating, so they operated urgently when her breathing worsened. Ayana spent weeks at the Royal Children’s Hospital, including time in ICU, but complications meant she required a second open-heart surgery before she could eventually come home.
“There was always one thing after another, but now touch wood, Ayana’s doing really well apart from having the nasal gastric tube, but that’s how she gets all her liquids into her.”
Demands on carers
Fast forward a year, and while Rachael’s days can be chaotic, with a “jam-packed” diary of medical appointments and playdates, they are also filled with joy and lots of family time.
“Every day is different, but generally we go by a lot of routine. I usually wake up at 5am just to start preparing everything because of Ayana’s medical needs.”
Luckily, Rachael’s two eldest daughters, Kiara, 9, and Nusra, 16, are always eager to jump in and support their younger siblings each day and through the tough times.
“They’re amazing at helping Ebony who is 3 years old regulate,” Rachael says. “Just this morning she was having a meltdown because she didn’t want toast. Kiara is just incredible, she just picks her up and cuddles her!
Support is available
Finding outside support has also been essential for Rachael and her family’s wellbeing. It was at a Down Syndrome Victoria StepUp! event that Rachael first learned about Carer Gateway.
“I didn’t realise how much support was available to carers and families,” she says.
Since giving Carer Gateway a call, Kiara and Nusra have been able to attend Little Dreamers’ peer support programs, where they met other young carers. They also accessed tutoring sessions to support their studies.
“Nusra’s confidence has really grown because she’s doing well at school, and now she’s thinking, ‘I can do really well in Year 11.’ That’s been amazing.”
Rachael understands the importance of looking after her own wellbeing too. Through Carer Gateway, she has been able to access a tailored support package to give her precious time back in her day.
“It’s helped me a lot. Even having a lady come in to clean the house once every two weeks. The kids are having a sleep, she’s cleaning the house, and I feel better. It just makes your head clear.”
“I highly recommend it because it’s something for the whole family.”
Many people caring for a family member with Down syndrome may not even realise they are carers, or that support is available just for them. Carer Gateway offers free emotional and practical support for every carer in the family, including young carers.
Call 1800 422 737 (Monday to Friday, 8am to 5pm) or visit their website to learn more.
Carer Gateway will have a stall at StepUP! 2026 Melbourne on Sunday 18 October, so come along for a chat, plus all the rest of the fun!
Carer Gateway – Holstep Health is proud to support Down Syndrome Victoria’s 2026 StepUP! event.