Article from 2019/2020 Impact of Giving Annual Report

Even though Lucia’s time on Earth was short, her legacy continues to live on and inspire others. Lucia passed away from a rare, genetic heart condition at just 99 days young. After sharing some of Lucia’s life and journey on social media, in the days, weeks and months following her passing, Lucia’s mum, Sally Crinis, was inundated with messages from family, friends and complete strangers who were inspired by Lucia to live better lives, be better parents and to take nothing for granted.

Wanting to honour their angel Lucia, Sally and husband Peter asked those who wanted to support to consider donating to heart research and care at the RCH. Together with family, friends and those who were touched by Lucia’s life, they have raised over half a million dollars, and counting.

When Lucia was born, Sally felt her life was perfect.

“Peter and I felt the happiest we ever had, we had the most divine baby Lucia, the sister to Sofia; our family was perfectly complete,” said Sally.

“The first days and weeks we had with Lucia were magical, I felt so content. I thought this is the way my life would be, we’d just moved into our newly rennovated family home, and we had two beautiful, and we thought, healthy girls.”

Despite Lucia being slightly jaundice and not hitting the right weight indicators in her first weeks of life, there were no major warning bells for what was to come. It wasn’t until a maternal child health appointment when Lucia was eight weeks old that there was any indication that something more serious could be at play.

“My maternal child health nurse noticed that Lucia had some neck lag and her eye’s were slower than standard following her fingers; Lucia was definitely alert though, and we were reassured that we probably had nothing to worry about, and we just had to keep monitoring her,” said Sally.

“In the end it was a blessing that we didn’t find out anything was wrong early, it meant that we had more time unaware of her condition, and we had more weeks living in our perfect bubble and perfect world. If we had found out earlier, we would have been living with a dark cloud.”

A few weeks later Lucia was having trouble breathing so spent a night in hospital, where an x-ray picked up that she had an enlarged heart. Following this news, Lucia was seen by her paediatrician and a cardiologist, where she underwent a multitude of tests.

“Those few days were traumatising, waiting for tests to come back. Lucia had hypertrophic cardiomyopathy, an enlarged heart, and doctors were doing some tests to find out why. There were different things it could be, most being pretty serious and some being terminal,” said Sally.

“It was an horrific experience, being told your child potentially has a life threatening, or terminal illness but they can’t tell you anything.”

At 12 weeks, whilst at home waiting for test results, Lucia’s condition began to deteriorate further.

“A few days later Lucia was deteriorating and wouldn’t take her feeds. I said, ‘I can’t do this anymore’ and I took her to the RCH. We drove into the Emergency Department at the RCH, and there was no way we would have known that she would never leave,” said Sally.

“I think of that morning, before my sister Suzy and I drove in and I want to savour every minute of her freedom, without tubes, beeping machines or doctors fussing.”

Once admitted onto the Koala Ward, Lucia was seen by Associate Professor Michael Cheung, Director of Cardiology at the RCH. Lucia underwent a series of advanced tests so that the teams could better understand and support her condition.

“I remember getting to the hospital. It was such a stressful time and I felt so much comfort knowing she was in the best hands, where there were teams of people behind you. I felt so alone at home, unsure of what we were doing. But at the RCH I could let go of the responsibility of Lucia’s care and hand it over to the experts,” said Sally.

Just a week later, Sally and Peter received news that no parent should ever hear; their baby Lucia had a terminal illness. Lucia was diagnosed with Pompe disease, a rare, inherited generic disorder which effects muscle development, leading to respiratory failure. There is no cure for the condition, with limited treatments available to slow the progression of the disease.

“Following a week of tests, we found out it was terminal. It was a Tuesday morning and she passed away the following Monday, it was extremely acute,” said Sally.

“It’s a sudden and awful moment to hold your baby in your arms when she slowly passes away. Only 14 weeks earlier I was holding her in my arms for the first time welcoming her to the world,” said Sally.

During Lucia’s final days in hospital, with all of Sally and Peter’s friends rallying around them, Lucia’s room at the RCH was transformed; filled with flowers, her own bed linen and colourful prints. Sally and Peter also held a christening for Lucia at the RCH and celebrated her life.

“Everyone came together, as tragic as it was, it was also amazing to feel the love and warmth from friends and family rally around us. I could let go and everyone else carried us through those days and that continued for weeks and months afterwards,” said Sally.

After Lucia passed away Sally and Peter asked that if people wanted to support and honour Lucia’s life, that they donate funds to support Michael’s heart research at the RCH. Within just 24 hours over $100,000 had been donated. Before Lucia’s funeral this amount had grown to $200,000.

“We wanted to give back in some way and to set up an official legacy for Lucia. Michael is the most amazing doctor I have ever met. He probably thinks he had no influence because he couldn’t ‘fix’ Lucia, but he was so kind and compassionate. Michael and his team, the heart ward, they helped with the christening and the love and care they provided was amazing,” said Sally.

Just months after Lucia’s passing, Sally, who had already committed to walking three kilometres as part of the Melbourne Marathon, decided instead to run the full 42 kilometres in honour of Lucia and to raise further funds.

By the time of the run the team ‘Lucia’s Angels’ had over 300 participants all running in pink for baby Lucia, including Sally’s twin sister Suzy.

“I wanted to turn this pain into something positive. It was very emotional; it was mine and Suzy’s first marathon and we were holding hands coming into the MCG and we could see a sea of pink all around us. We were crying, crossing the finish line with our siblings and husbands – Lucia pushed me on and running the whole way I thought of her,” said Sally.

“The amazing generosity and support we received from everyone, including anonymous donations from people that we have never met, we have been emotionally and financially blown away by it, and the support of friends and family really carried us through that time.”

Donations in the days following Lucia’s passing, the Marathon run, private contributions and sales from tea towels at Minimax which were decorated by Sofia and her kindergarten friends has meant over $500,000 has already been raised to support heart research and care at the RCH. Sally and Peter have committed to raising an incredible $1 million.

“Lucia keeps influencing coming from above. She had the most profound effect on many people and more than many would in a lifetime. Along with all the pain, we are proud of her and her story,” said Sally.

“Lucia has changed many people’s lives; this little soul has had such a huge influence emotionally and we hope the money we have raised will make a difference.”