How one young woman’s suffering with trust in God transformed her, her family, and many more others than she could ever have dreamed
Scott and Jenni Egan had spent four years caring for their terminally ill daughter Ellíe in their home in Dundas Valley in Sydney’s northwest when the unimaginable happened. Their healthy 17-year-old son Zack fell ill and died suddenly from a sinus infection.
Six months later, on 10 January this year, Ellíe finally died from her illness leaving her parents, and two sisters Leia, 22, and Zoe, 17, heartbroken but not alone.
For years their extended family, friends, work colleagues, schools and parish communities unleashed an avalanche of love, practical support and prayer.
And while the grief and trauma is still evident at times, Jenni takes comfort knowing that Ellíe has taught hundreds if not thousands about the power of faith that turns all things to good, even suffering, disability, and death.
“We can’t tell Ellíe and Zack’s story without mentioning our faith, because that’s the only thing that got us through,” she told The Catholic Weekly during a recent visit to the Egan home. “Our faith has just grown exponentially, but when this all started we were just your normal dysfunctional family, and us even more so than others.
“We were in a really rough spot, it wasn’t all roses around here at all. If you knew the rut that we were in back then, and knowing us now, you’d agree it’s been a miracle.”
Ellíe was 15 and a student at Tangara School for Girls in Cherrybrook when she was diagnosed with a rare, 100 percent fatal, fast-growing tumour in the brain stem. She deteriorated quickly, within months losing her ability to walk and to use her right hand.
Writing to her schoolmates about it later, she told them that her tumour affected the right side of her body, her vision, mouth and speech, while medications caused weight gain and sensitive skin. She at first struggled with the mental and emotional side of dealing with her very poor prognosis and drastic life changes and was angry with God.
“Then my mum told me all we could do was pray and she told me to hand myself over to God and that He will find good in all this,” she wrote. “It was all I had so I just started trusting in Him and told Him I trust what you’re doing with me.
“Once I did this and started praying more my worries started to go away. I realised that I was doing God’s will that no matter what happened everything was going to be ok.
“I was going to continue my life or end up hanging out with God in heaven which is a pretty cool option as well. Having this hope and faith in God changed everything … I can honestly say that last two years have been the best of my life.”
“Ellíe was a typical teenager, she had her struggles and wasn’t an angel by any means, and that first year after her diagnosis was terrible for her,” her mum recalled.
“It was my mum [Julie Herrenberg] who was telling me from the very first day you’ve got to build your faith, it’s the only way you’re going to get through this.
“And then I in turn was teaching Ellíe and helping her with that. We really leant on our faith and learnt about suffering and why these things happen and it just grew and grew. And Fr John Flader [school chaplain at the time] wrote a prayer that we prayed every single day, and every person at Ellíe’s school prayed it every day.
“People starting coming to our house for a rosary to pray for Ellíe each week, friends, family, neighbours who had never prayed in their lives before.
The grace that came from that was just incredible. Once we opened ourselves up to God it literally poured into this house and almost made it easy.” – Jenni Egan
“The grace that came from that was just incredible. Once we opened ourselves up to God it literally poured into this house and almost made it easy.
“You can’t explain it any other way, especially coming from my past and my struggles it’s supernatural. There’s no other explanation of the peace and the joy that I feel now which is the complete opposite of how I felt my whole life prior.” Scott, the self-designated family chef says he didn’t have to cook dinner for years, with school families signing up to a meal roster.
People constantly dropped by with flowers and fruit and veg boxes, or just for a cup of tea with Ellíe. Friends built ramp access to the house and rebuilt the bathroom gratis, and more than 700 people contributed to a Gofundme appeal to help the family with their expenses and to allow both parents to be Ellíe’s carers in her last months.
“I don’t know how we would have got by without all the help, including financial help that we got from day one,” said Scott.
“I’m not Catholic and I’d never seen any community get together like that in my life before. It was amazing, and it was more than just support, it was love.”
Known as the ‘miracle’ girl at Westmead Children’s Hospital for surviving her condition for so long, Jenni says Ellíe was an amazing witness to faith for her family, and as her prayer card was distributed and shared for years, hundreds of people she didn’t even know.
“She was so brave, and then when Zack died in that terrible week she saw how she had taught us all about death and what it was all about and how we dealt with that, and she pretty much let go after that.
“It showed her that we were going to be ok, and she couldn’t wait to get to Zack.”
A funny, bright and energetic teenager, Zack had several circles of friends including his Redfield College and his skateboarding mates. Undoubtedly the “coolest boy in his class”, at his funeral the school chaplain Fr Phillip Elias said that he took the sacrament of confession seriously.
“Ellíe adored him,” said Scott of his “beautiful boy”. “It wasn’t always that way, but Zack developed this amazing sense of humour over the last couple of years of his life that just cracked Ellíe up, she just loved it.”
Zack fell ill and died from his infection on 28 June 2021.
Many of Ellíe and Zack’s relatives and friends are convinced that the siblings are leaving a trail of blessings lighting – and lightening – the way to their eternal home.
“The whole thing really taught me that you can’t do anything without God. I obviously leant on that to deal with my siblings’ suffering and deaths but I think it applies to everything else,” said Leia.
“My work life is better, my social life is better, everything is better because of my faith.
“I was 17 when Ellíe was diagnosed and I wasn’t an atheist but I hated God and was very, very angry with God for allowing it.
“For the first few years I couldn’t stand the thought of praying. But I wasn’t coping with anything and I saw the grace that both mum had and my sister had through all that she was going through, and she was coping and happier than I was, and I wanted that.
“And so it was a long few years of fighting and resisting but of course in the end after lots of little things along the way, one day it just hit me like a ton of bricks and I went oh my goodness, that’s my answer, I need God and I want to want God and I have to change.”
On a social media post written shortly after both of her siblings had died, Leia wrote that for a long time she thought a miracle would cure Ellíe.
“I now know that the miracle WAS her. The way God worked through her. The way our family was transformed because of her. That I have a shot at Heaven because of her. That I have someone to strive to be like. Someone who gave me my faith back.”