A long-awaited holiday for the Olivier-Goossens family
“As you can hear, she’s very happy!” Eva says of her 9-month-old daughter, Zoe, who is giggling away. Zoe has managed to keep a big, brave smile on her face through some tough challenges she’s faced in her first few months of life.
Eva explains, “I had quite a complicated pregnancy with Zoe. She was born prematurely at 33 weeks via emergency C-section and was in the Neonatal Intensive Care Unit (NICU) at Flinders for 80 days.”
“When she was there, she was not growing the way she should. She had some infections as well as ongoing diarrhoea, so there were quite a few warning signs that something was going on.”
“Just after we were discharged, we received a call from the geneticists at the Women’s and Children’s Hospital (WCH) to let us know that she was diagnosed with MIRAGE syndrome, a very rare genetic syndrome. There are less than 50 people in the world who have it and it’s very complex in many different areas.”
Zoe is now under the care of the WCH Palliative Care Service, with a team of around a dozen doctors looking after her.
“Despite everything she is going through though, we are very lucky that she is a very chilled baby,” Eva says.
“Zoe loves her brother and sister. She’s always giggling and is very social. She’s a delight.”
Since Zoe’s diagnosis, many challenges have been thrown her way.
“Children with MIRAGE syndrome are very susceptible to infections which can be deadly for them,” Eva explains.
“Zoe got an infection not long after her diagnosis, and she got quite sick from it. She had to be ventilated and stayed in hospital for five weeks. That was quite tricky, but she made it. Then Zoe got COVID. She actually did quite well which was surprising considering she is immunocompromised as well.”
The family has been home now for a few months. They’re at the WCH weekly for appointments but have been learning to do some of Zoe’s treatment themselves at home.
“It’s quite a journey,” Eva says.
“It’s hard for us to manage and live with the unknown. We don’t know what to expect, so we try to enjoy our time together as best as possible.”
A trip to the Laklinyeri Beach House
“We had been planning to go away with the kids since I was pregnant, but every time there was something that came up. It was tricky towards the end of the pregnancy, then we were waiting for Zoe to get out of NICU, then we were waiting for her results, and then she got sick,” Eva says.
“We just wanted to get away, so when a social worker told us about the Beach House we were thrilled! We just wanted to have fun together and get out of the house.”
The Laklinyeri Beach House is a purpose-built holiday facility in Victor Harbor for families of children in Palliative Care or Complex Care, as well as for bereaved families. It’s a special place of togetherness for families to reconnect or to take time out of their rigorous hospital routines to relax and recuperate.
In June, Zoe stayed in the House with mum, Eva, dad, Stephen, sister, Lily and brother, Zack.
Eva says, “We didn’t have any expectations, we just wanted to get out and have a bit of time away and when we got to the Beach House we were blown away. It was amazing.”
Thanks to vouchers from the HAS Foundation, the family visited Urimbirra Wildlife Park, took a trip on the Cockle Train, had a family photo shoot and had massages. Lily and Jack loved having movie nights, exploring the cubby house, doing lots of drawing and playing with the toys they were gifted.
“Even though the weather was horrific, we didn’t care, it was great!” Eva laughed.
“The Beach House is a beautiful home. It’s all made through empathy towards people, and you really can feel it.”
“We’re very, very grateful to have had this opportunity. It was much needed and we loved it.”
To learn more about our Laklinyeri Beach House, click here.Back to all news