HELÈNA McIlwain loved stars. Her sister Sophia says it started out as a fashion trend – she wanted stars on dresses, on shirts, on skirts – but soon enough, everything Helèna owned needed to have a star on it. As her mum, artist and educator Fiona McIlwain says, stars were “her thing”.
Nobody imagined the resilient and bright teenager would have a star named after her before she turned 20.
Helèna McIlwain – the star – is situated within the Southern Cross, and on a clear night it can be seen with the naked eye, to her mum and dad’s delight. The naming rights to the star were purchased by Helèna’s workmates; they had watched the 19 year old thrive in a job that was becoming her new dream.
She wanted to make life better for young people with a disability.
Fiona and Eric McIlwain say their daughter had an innate desire to help others, and even from a young age, she showed a deep, non-judgemental compassion for people whom the world called different.
First there was Michael – she thought of him as her best friend, not a boy with Down Syndrome. Michael was the son of a close family friend who lived across the road from Fiona’s parents. He had a severe heart condition on top of being born with Down Syndrome. But that didn’t matter at all to Helèna.
“And all through his life, Helèna was his friend, best friend,” Fiona said. “Michael had very little speech, but he’d say, ‘Helèna’.
“I’ve got photos of her with Michael, this little girl just playing with him. She never saw him as anything different, she just wanted to help him.”
Helèna helped Michael through to his last breath – she read his last story right before he died, aged 13.
HELÈNA knew what it was like to overcome challenges in life; it was probably why she wanted to be a doctor.
She was born on March 10, 2000 with congenital hip dysplasia and Erb’s palsy, and developed bladder reflux as a toddler. As a result of her conditions, she underwent several major surgeries by the time she was two.
“I remember one of Helèna’s doctors said, ‘All the little kids who come to me deserve a birthday party’,” Fiona said. “I had that always in the back of my mind.”
After that, Helèna never took life in vain – she became a strong and victorious swimmer, and grew into a confident and resilient young woman.
“She was happy, big smile, laughing, pretty as a picture, gorgeous,” Fiona described.
At the end of primary school she wanted to be a brain surgeon; it was still her goal to be a doctor when she left All Hallows’ School to go to university and study biomedical science. But something changed when she started working for Best Life and Conductive Education Queensland (CEQ), two disability services offering programs to help young people with disabilities gain independence. The work revealed how much she loved people with disabilities, so she decided to study Occupational Therapy so she could be of more help. It was physically demanding work; some days she’d come home with cuts or bite marks, and her work duties were confronting for a teenager. But she loved the work and the people anyway.
“She was never put off by people with disabilities, because it’s a very difficult area to work in,” her dad Eric said.
“Some people do it for a week or so, she would just keep going. Nothing about working with people with disabilities phased her. She had an incredible amount of empathy as well too. She got on their level, she didn’t try and come over from the top, she understood them.”
She also felt like she had something in common with her clients.
“Helèna had some impressive scars on her body from previous operations, and a lot of cerebral palsy kids have hip dysplasia and need massive operations,” Fiona said. “I think she used to say, “It’s just like me mum”.
“She felt she had that connection. She just wanted to help so much.”
BROUGHT up in a Catholic family, Helèna also believed that people with disabilities were closer to God than most people.
“She was a very spiritual young girl,” Fiona said. “She believed in the big picture, there was a greater God, and she felt that people with disabilities had more of a spiritual presence too. We talked about that one time – they were here to teach us all, it shouldn’t be the other way around. She was learning, and you could see that within her – when she was talking about who she was looking after, oh, the love.”
Eric could see Helèna’s work as her way of living out charity, mercy and justice.
“The message of helping those who need help, that’s what our faith is all about, and she saw her work with disabilities as an extension in all of that,” Eric said. “That’s how it manifested itself.”
In July of 2019, Helèna made a call to her parents who were visiting friends on the Gold Coast. She had misstepped down a flight of stairs, and was on her way to the hospital.
“She was at work, she’d actually just arrived at camp with CEQ, the business she worked for, so she misstepped while walking down the set of stairs and rolled her ankle,” Eric said. “She came home and over the course of the next week, we went to see doctors and came up with a diagnosis having viewed the x-ray that she’d actually damaged all the ligaments in her right ankle as well as cracked the bone.”
Helèna was in a moon boot for several weeks while she started rehabilitation on her ankle, which included trips to the physiotherapist, hydrotherapy, as well as routine exercise. During rehabilitation, it was decided that she needed to have an operation to correct the damaged ligaments, but apart from that, there were no warning signs of anything life-threatening. As she recovered, she thought of others; they even encompassed the final words she said to her parents.
On October 13 she called her mum, who was in Goondiwindi with her younger sister, Sophia, with an idea.
“She was saying, ‘Oh mum I’ve got all these great ideas for you for your art therapy, and I know how you can help this particular child,” Fiona said.
The pair agreed to talk through the ideas over dinner when Fiona and Sophia returned from their trip. Later that same day, Helèna called her father, who was up north in Townsville.
“Part of the conversation was she was talking about the lack of facilities for young people with disabilities, and how so much more should be done, that the government wasn’t stepping up enough,” Eric said. “She was just really passionate about it.”
Less than an hour later, Eric received another phone call. It was a staff member from the gym where Helèna was doing a routine workout.
Helèna had unexpectedly collapsed.
One of Fiona’s brothers organised a charter flight from Goondiwindi for Fiona and Sophia, and Eric waited anxiously for a return flight to Brisbane. Helèna’s closest cousins, who live in Brisbane, were the first to arrive at the gym, to be with her. She was given emergency CPR and the best medical attention, but God had other plans.
He was calling Helèna home.
HELÈNA’S tragic death nearly 18 months ago is still a mystery to her family – she had suffered a pulmonary embolism
“We’re still living the trauma,” Fiona said. “It’s still very difficult to talk about what happened to Helèna.”
Masses have been said for Helèna on her birthday and at Christmas, and there are always new letters or fresh flowers scattered among the holy objects, like her baptismal candle and confirmation saint statue, that line her grave.
In the weeks and months that followed the McIlwain’s tragic loss, one thing has been certain – Helèna’s short time on earth made a profound impact on countless lives. They write often to the family with their memories of Helèna.
“I was looking the other day at a letter from one of her clients,” Fiona said.
“Helèna was a big believer in PODD books, the communication computers that they used, and she really encouraged them to use that, and he had obviously written this letter using one and they printed it off and sent it to me.
“She was like a sister. Pretty. We share things. She’s very sick. Helèna, great at swimming. I miss Helèna.”
The star registered in Helèna’s name is yet more evidence of the 19 year old’s impact. Eric and Fiona had a chance to see it while on a road trip in Helèna’s honour. The family were retracing Helèna’s last trip on earth, a drive between Winton and Longreach.
“She had gone out to babysit my brother’s four children for about six or seven days while he and his wife had to work,” Fiona said. “So we did a big trip and we sprinkled stars the whole trip; where she had stopped, we sprinkled little stars.”
During the trip the McIlwains popped into the famous Charleville Cosmos Centre, an observatory that offers evening stargazing sessions. The family told the tour guide their request to see a star named after their daughter. The guide told them to hang back after the tour, that he would find the star.
Amazingly, he found it with the naked eye.
“We’re all crying, trying to look up at the stars,” Fiona said.
“He was crying too.”
Fiona and Eric left the observatory with a photograph of their daughter’s star.
ONE of Helèna’s closest admirers is the founder of her workplace, BestLife. Kath Coory started BestLife to provide out-of-home activities for her daughter, who has intellectual and mild physical disabilities. It currently offers sleepover programs and day programs to teach children and teenagers with disabilities the skills to live an independent life away from their parents. Most of their programs were being run in a rental home, but that was put up for sale shortly after Helèna died.
Knowing how much Helèna supported their mission, BestLife told Eric and Fiona that they had a new goal to purchase or build a five-bedroom house of their own, and they had one request – could they call it Helèna’s House?
“Apart from crying our heads off, we said we’d love to help them and get behind what they’re doing if we can,” Fiona said.
“We were so honoured that people thought so highly of Helèna.”
Helèna’s House is still in its infancy, but the BestLife team and the McIlwain family are busy planning the first major fundraising event – “a friendraiser” according to Fiona – on June 19, which will be called ‘Starry, Starry Night – Canvases and Cocktails’.
Attendees will have a chance to purchase a handmade star with their ticket, which will be featured in a custom art piece inside Helèna’s House.
The BestLife team and the McIlwain family hope to raise $300,000 this year.
The project has the blessing of one of Queensland’s most inspirational nuns, Mercy Sister Angela Mary Doyle, who told Fiona at a recent meeting: “We’re not going to let Helèna’s name die.”
Madame Butterfly, better known as Olympic champion Susie O’Neill, has also come on board as Helèna’s House ambassador.
Fiona and Eric believe the project is the least they could do to continue Helèna’s hopes and prayers for people with disabilities, and to keep her memory alive for the children she loved.
“If all the world was full of wonderful people like Helèna, who waltzed in with her long blonde hair and her big smile, you know – ‘Hello’ and they all immediately loved her, immediately,” Fiona said.
“They don’t love everybody who walks in the door, but they loved her.”
Tickers for Starry, Starry Night are available here.
More information about Helèna’s House including how to donate to the project is available on their Facebook page and the BestLife website or call 0459 707 850.
