No parent will ever forget the moment they first lay eyes on their newborn child.
For Eve’s mum and dad, Georgie and Shaun, this moment of joy was quickly overshadowed by fear when they heard their baby wasn’t breathing and Eve’s lungs had collapsed.
Every second that went by in that delivery room was excruciating for Eve’s parents, as they watched their newborn baby fighting for her life. Her doctors didn’t know if she would survive the night.
Georgie said, “We went from crying with happiness when Eve was born to tears of dread and fear when she couldn’t breathe minutes later. I don’t think I’ve ever felt so helpless in my life. It felt like our world was crumbling.”
Some children are born with conditions that are extremely rare and not yet fully understood. Eve was one of those children. She still doesn’t have a precise diagnosis other than she has a type of lung and heart condition called Interstitial Lung Disease and Pulmonary Hypertension. There is no cure or proven treatment plan.
Today, Eve is three years old. Her condition hasn’t changed, and she remains on oxygen 24/7. Each day is uncertain for Eve and her family, so it is vital that they can rely on Very Special Kids’ support services for emotional, clinical and practical support.
“Very Special Kids is a lifeline to us,” shares Georgie. “They’re our main support network offering everything from respite to advice on equipment, and someone to talk to. They have helped us stay afloat emotionally through the toughest of times.”
As Georgie and Shaun try their best to keep up with Eve’s complex needs, their Very Special Kids’ Family Support Practitioner, Heidi, provides regular counselling and guidance.
Excitingly, the family has welcomed a new member with baby brother Jack’s arrival. But the sad truth is that Eve’s family continue to face enormous hurdles daily.
“Living with the grief of not knowing what will happen means we can be quite confronted by things like kinder coming up. We are always trying to figure out how Eve can connect with kids when she’s attached to this one and a half meter oxygen cord.
I get a wave of grief for Eve when I see kids on bikes or my mother’s group talking about their kids going to kinder because that’s going to look really different for her.”
It is vital that children like Eve can enjoy the best quality of life and create positive, lasting memories together as a family. Memories like Eve’s recent trip to Glen Osmond Farm, our specialised, free-of-charge family holiday accommodation.
Georgie shared, “We’d never be able to go on a holiday if it weren’t for the farm. Very Special Kids provide an opportunity to pack up, go to the beautiful countryside, and just enjoy time as a family. We love it and feel so relaxed there because it is also near the hospital if anything was to go wrong.”
Your support this Christmas will help a family like Eve’s at every stage of their journey with a life-limiting illness.
There is no better gift you can give a family like Eve’s than your support. This Christmas, please give a special Christmas gift to offer vital support at every stage, from counselling to respite care.
