
Please help Evie live her best life
Donation protected
Friday the 22nd, after an amazing day full of laughter, love and last minute Christmas shopping….Beautiful and brilliant Evie had a prolonged seizure.
It came out of nowhere. She was completely healthy, no flu symptoms, nothing out of the ordinary, she didn’t complain about feeling ill before hand…
She was playing fortnight with her big sister and her sisters boyfriend and on a call with them at the same time. Totally normal teenage behaviour.… Emma-Grace says - in typical Evie fashion - she was giving them, ‘Couple Counselling’..She got up to use the bathroom and Emma-Grace found her seizing. Em alerted Daniel and he put her in the recovery position and kept her airways clear whilst Bonnie called the ambulance.
Evie was taken to Cairns Base Hospital where once she stopped seizing (2 hours all together) she was placed on life support and taken to the intensive care unit. The staff there were incredible, not only looking after Evie but making sure Santa visited her. Dan and Bonnie spent Christmas in the ICU whilst relaying how to cook a roast dinner to Emma-Grace over text message (who did brilliantly btw). It was the most surreal Christmas ever….
After two MRI’s, EEG’s and Lumbar Punctures everything imaginable has been ruled out. No meningitis, no infection, no tumour, no lesion…no answers…
And all the while sedation has been lowered to the point that Evie could wake up if she could…she just wouldn’t yet.
She was making involuntary movements predominantly on her left side. She would open her eyes but it was fleeting and she wouldn’t lock eyes with anyone.
After a repeat MRI, we started hearing the words, ‘Brain damage’, ‘Critical Care’ and ‘Marathon Recovery’ and Dan and Bonnie were given an hours notice that she would be air lifted to Townsville hospital. Apparently they have one of the best paediatric neurology intensive care units in Queensland. So Evie flew with The Royal Flying Doctors whilst Dan and Bonnie went home and got the other two ready for a stay at Ronald McDonald House.
Bonnie is so grateful and feel extremely blessed that her husband Dan is oh so strong, able to think under pressure and with Emma’s help - saved Evies life. He has been her rock and her strength whilst she has slowly been falling apart.
Through the worst Christmas of their lives they have put on as much of a brave face as they can, acutely aware that they have two other children who’s ASD is in hyper mode with all this change of routine.
They are trying their utmost to remain brave, strong and create some kind of normalcy not only for Zeke and Em but for their own longevity, health and wellbeing.
They took Evie off life support on the 30th of December but her oxygen stats keep dropping, they suction her every hour to get the gunk off her chest. She receives intensive physio four times a day to help her cough and initiate deep breaths.
If she keeps going like this then it’s is hopeful that she can at least breath on her own but then they are worried about infections and the fact she is so tired.
She has had an infection already from the first arterial line and a constant temperature.
Because the seizure was so prolonged there has also been damage to her heart.
The family have been told that because Evies brain went without oxygen for so long, the Evie they knew and loved is gone forever.
She will never fill the room
with her infectious laughter, talk for hours and hours about Avatar or HeartStopper, giggle about a secret crush, play with her beloved dogs or hug her family again…
Right now the family is facing the absolute nightmare of what life looks like living between two cities, upgrading cars to be wheelchair friendly, moving Evie to a more accessible living space all the while maintaining and striving for some kind of normal balance for Ezekiel and Emma-Grace.
Your support would enable some of these things to come to fruition and enable this already shattered family time to stay together in one city.
Organizer
Bronwyn Turner
Organizer
Wrights Creek, QLD