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Sophie's Journey

3/22/2019
by: Running Bare
RUNNING FOR PREMATURE BABIES

Founder of the “Running for Premature Babies” foundation and 2019 NSW Local Hero (Australian of the Year Awards), Sophie Smith, shares her journey raising $3 million for life saving neonatal equipment and funded research into premature birth.

What was your inspiration behind starting the “Running for Premature Babies” foundation?

In 2006 my husband Ash and I were amazed and delighted to become pregnant with triplets. Our joy turned to tragedy, however when my waters broke, just 21 weeks into the pregnancy.

Five days later, our first son Henry was born. He gave a tiny cry and was laid on my chest where, for one precious hour, I held him and felt his heart beating against mine. His tiny hands squeezed onto our fingers and then, an hour after he was born, he passed away.

Incredibly Henry’s siblings didn’t follow their brother into the world that day. As intervention wasn’t given to babies born before 24 weeks, we had a long way to go. But as the days passed our hopes grew.  At 24 ½ weeks, after three weeks of bedrest in hospital, my waters broke once again and Jasper and Evan were born by emergency caesarean. They were immediately intubated and transferred to the Neonatal Intensive Care Unit (NICU) at the Royal Hospital for Women, Sydney.

Weighing less than a kilo we knew our boys had a long fight ahead. However, babies this small had survived before and we were optimistic.

But when our babies were ten days old, we rushed to the hospital in the middle of the night as Evan had taken ill. We sat with him through the night and in the morning learned that he had suffered a severe brain haemorrhage. Heartbroken, we had no choice but to remove him from his life support.
This was the first time Ash and I had held Evan. We told him how much we loved him, kissed him and he slipped away while he was in my arms.

Over the next few weeks Jasper began to grow stronger. There was the amazing day that he opened his eyes for the first time, the handful of times we were allowed to take him out of his crib for a cuddle, and the time I gave him one precious breastfeed.

Sadly, like many such premature babies, our baby had chronic lung disease. Jasper’s lungs kept collapsing and many times over the next few weeks we came close to losing him. However, each time he amazed his doctors and fought on.

At 58 days old Jasper’s lungs collapsed again, but this time he could not be revived. Once again, we took our baby out of his crib, and held him while he passed away.

Ash and I were left heartbroken but determined that something good could come from our little boys’ short lives. Our lives were richer for having been their parents and they had brought so much love into our lives. We wanted to find a way to honour them and ensure that their lives really truly mattered. I knew that nothing I could do would bring my babies back, but it was up to me as their mum to ensure their lives mattered.

Our fundraising started as a quest to run a half marathon and raise $20,000 for one new humidicrib for the hospital, in memory of our boys.  When our babies were in hospital, we realised that most of the machines that kept our boys alive were donated and learned that the hospital relies on fundraising for 70% of the equipment in the unit. We also knew that some of the machines were old and needed updating and that new technology meant that better equipment was available. We decided to run the upcoming Sydney Morning Herald Half Marathon, and call our team Running for Premature Babies.



We began pulling together our first half marathon team only a few weeks after Jasper’s death, and having something positive to channel my grief into really helped me.

Every single person who contacted me and signed up gave me a little bit more strength! I found that organising a running team for the hospital in my boys’ memory, I had ‘permission’ to speak their names, and that helped me heal. And knowing that our fundraising was helping other premature babies to live gave me great comfort.

Before we knew it, we had 98 runners on our team at the start line of the SMH Half Marathon on 20 May 2007 and we well and truly smashed our goal of $20,000, raising $80,000 and providing the hospital with four new humidicribs!

I had organised team running singlets for our runners with Henry, Jasper and Evan’s life-sized handprints on the back of our shirts. I reminded my runners at the start line that when the going got tough in the race to remember the hands on their backs. Henry, Jasper and Evan would push them along. I tell my team this before the race every year now, and many people tell me afterwards how that image helped them keep going!

We found ourselves organising the team again the next year, with more and more people putting up their hands to volunteer to help - suddenly we had a comprehensive training program and professional trainers leading sessions in several locations around Sydney, a web designer offered to build me a website, the local trophy shop donated a trophy for my fastest runners, and Running Bare began providing our team uniform. People seemed to come from everywhere to help, and our team soon became the biggest in the SMH Half Marathon.

Two years after losing our triplets, and six months after welcoming our fourth son, a big, fat, beautiful bouncing baby called Owen, tragedy struck my family once again.   Ash, then 36, was busy training for the upcoming SMH Half Marathon, and hoping to beat his PB of 99 minutes. He began to have debilitating headaches, and to our utter shock he was diagnosed with an aggressive form of brain cancer with a grim prognosis.  Instead of worrying about dying Ash got on with living. He approached his illness with a courage I’ve never before seen and refused to let it get in the way of us enjoying our lives.




He defied the odds and returned to full health, and we became parents once again to another son, Harvey. When his cancer reared its ugly head five years later, he never asked, ‘Why me?’ and he never gave up. He even continued to run the Sydney half marathon on our Running for Premature Babies team between surgery and chemo - it took him over three hours to complete his last race in May 2015, but he did it! He endured countless surgeries to remove recurrent tumours, chemo and radiotherapy, but eventually no more could be done to save him and he passed away on 20 February 2016. 
It was after Ash died that I decided to finally register Running for Premature Babies as a charitable foundation, and so begin a new chapter for our cause. My vision is for a better chance of survival for premature babies, and I want our work to expand to support NICUs right around the country.  Since then I’ve taken teams to run full marathons in New York and Chicago, and we now have teams running in running events in Sydney, Brisbane, The Gold Coast and The Sunshine Coast. This year I’m also taking a team to Nepal to run the Annapurna Marathon!
 

Join Sophie and her team of runners in the SMH Half Marathon on the 19th May or in one of her many other running events throughout the year. Simply click here  for details and turn an awesome running achievement into one that’s life giving too.”

 
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