Mornington family of four—Shaun, Georgie, Eve and Jack—love spending time at the beach and exploring all that’s to offer along the peninsula.
Eve, at four-years-old, suffers from childhood interstitial lung disease (chILD)—a term that describes a group of rare lung diseases—along with pulmonary hypertension. Experiencing both heart and lung disease, Eve requires oxygen support 24 hours a day, seven days a week.
“Doctors believe her disease is caused by a mutation in the gene known as the TBX-4 gene. Georgie and Jack share the same mutation however have no symptoms,” dad, Shaun, says.
Respiratory syncytial virus, commonly known as RSV, is an illness that according to Shaun, “we had spent Eve’s entire life trying to avoid like the plague.”
“We knew that it could be extremely severe in not only kids like Eve with compromised lungs, but also healthy infants and toddlers.”
Last winter, the family’s worst nightmare came true. Eve, three at the time, alongside her brother Jack who was just six months, both were admitted to the Paediatric Intensive Care Unit (PICU) at the RCH with RSV.
“It felt almost surreal having both of them in there at the same time, almost like the stuff of nightmares. It was terrifying seeing them both struggling.”
Eve had already been in PICU for a few days before Jack was admitted. “I remember one night, would have been about 2am, I just couldn’t settle him. His cry was unlike any I had ever heard. He was doing it really tough and needed oxygen.”
“They managed to get him in the room next to Eve’s room so we could simply go between the glass wall divider, which was such a blessing.
“I had moments where I didn’t think it was real, especially seeing Jack now on oxygen, it brought back a heap of memories and emotion of when Eve was younger. How were both our kids this sick at the same time I remembered thinking.”
After a collective two and a half week stint in PICU, Eve and Jack were finally able to go home.
Thankfully today, a year later, Eve and Jack are doing really well.
“Jack is walking everywhere and we can’t get the smile off his face. Eve is involved in more and more activities as she starts to navigate childhood and she is developing more and more sass.
“It’s hard sometimes when half your heart is filled with joy whilst the other half is teetering on the verge of utter grief and despair. I say this because we don’t know how long we have with Eve. We know the reality of her condition and that at any moment she could deteriorate rapidly and never recover.
“But right now Eve is as happy as can be, singing, laughing and dancing. She continues to fill our hearts with joy and love, and I know that she will continue to do so for many, many, many years to come.”
“What makes me proud is seeing her throw herself into absolutely every activity that a toddler her age would do. She has never once complained about being restricted by a cord attached to an oxygen cylinder or concentrator and has learned that it is a part of who he is.
“When you look at Eve you see this beautiful girl, full of spirit, full of hope and love and curiosity. You also see a strong side to her. Eve is a fighter and has overcome everything that has been thrown at her.
“She is a testament to what it is to be strong willed and resilient. She continues to show us how to live and reminds us of the beauty of life.”
To mark RSV Awareness Week, please remember Shaun’s important message. RSV can affect all children, including otherwise healthy children like Jack who ended up requiring oxygen support in PICU.
You can learn more on RSV through our Kids Health Information resources.
