Earlybirds chats with Running for Premature Babies founder Sophie Smith
Running for Prems at the Sydney Half Marathon 2019
Photograph by Salty Dingo
Running for Premature Babies was established in 2007 by Sophie Smith after she and her husband Ash lost their first-born triplet sons Henry, Jasper and Evan. Sophie and Ash’s sons passed away after they were born extremely prematurely at 24 weeks.
During their stay in NICU, Sophie and Ash learned how much hospitals rely on donations to buy the most up-to-date technology to care for the one 10 babies who are born prematurely in Australia.
Sophie and Ash wanted to help other premature babies and their families by raising money for life-saving equipment for the Sydney Royal Women’s’ Hospital (RWH). So it was that with the idea that you have to put one foot in front of the other and holding the memory of Henry, Jasper and Evan in their hearts, Running for Premature Babies was founded. The foundation has raised over 3.5 million dollars to date and directly benefitted 5,500 babies by purchasing NICU equipment with funds raised by the marathon.
Sophie and Ash later welcomed sons Owen (now 10) and Harvey (now 8) and continued to build Running for Premature Babies (RFPB). Tragically in 2016, Ash lost his battle with brain cancer at only 41 years old.
Whilst raising Owen and Harvey and juggling day-to-day life in isolation, Sophie continues to build the legacy she and Ash began together and looks forward to catching up with the children and families that have been helped by RFPB.
Earlybirds sat down with Sophie to find out what Running for Premature Babies 2020 will look like and how people can get involved in the virtual run.
Hi Sophie. What will the virtual run look like this year?
Hi. This is the first time we’ve ever done a virtual run. Our biggest fundraising event of the year, the Sydney Morning Herald Half Marathon, has been postponed until November, so we came up with the idea to organise our own virtual run. Our main goal for this run is to keep our spirits high and have a running goal to work towards - or even a walking goal.
We understand that everyone is doing it tough, and many people have lost their jobs and don’t feel comfortable asking for donations during this time, so we’ve made fundraising/donating optional. There are run distances from 2 kilometres to 21 kilometres to choose from and of course there are no time cut offs (unlike the SMH Half Marathon) so you can walk if you prefer. We’re hoping to get 500 people participating.
We’re giving people a week (17 - 24 May) to complete their run distance -which they then upload and send to us along with a photo. Walking and of course pram-pushing is welcomed and encouraged, whatever you feel comfortable doing. Everyone will receive a finisher's certificate and will go into a draw to win one of three limited edition pair of Running For Premature Babies branded running socks.
We will also be collecting photos from everyone which we will put into a montage as a ‘team photo’ because in our physical races we always meet for a team photo before the race.
Jasper in the Royal Women's Hospital
Photograph provided by Sophie Smith
We will publish pictures of the top three runners across the line on our website and anyone who donates $100 or more will get a free Running For Premature Babies running singlet and cap. I think during these difficult times of social distancing and isolation, one of the things we can still get out and enjoy is exercise and this is a wonderful way to create motivation.
We are hoping to raise $130,000 through this event, which is what we need to fund our final 12 months of research at the RHW NICU. We really want to keep people’s spirits high and keep this wonderful event going. We are hoping to be back in full swing next year and have our sights set on running the Australian Outback Marathon in Alice Springs.
You’ve raised $3.5 million so far for Sydney’s Royal Hospital for Women. Congratulations! Is there a goal you are striving for this year?
Thank you. I’m very proud of the tangible difference that this funding has made to over 6000 premature babies so far. We’ve provided 59 pieces of lifesaving equipment to the RHW’s NICU, including an entire new monitoring system for the Unit which we provided last year, the unit has transformed the way the neonatologists and neonatal nurses can care for their tiny patients.
We’ve also been able to fund the equipment needed to expand the unit from one that used to have 12 NICU beds to now having 20. We’ve provided humidicribs, ventilators, monitors, an ultrasound machine and x-ray machine. And we’ve funded $700,000 of neonatal research in the unit, advancing the care of premature babies for the future.
I’m excited that our charity is now expanding to support more neonatal units and make a difference to more babies born prematurely. We now have a presence in Queensland and enter teams into the Brisbane marathon festival and the Gold Coast marathon festival, and we will be supporting the Royal Brisbane and Women’s Hospital.
This year our goal is to raise $130,000 to fund 12 more months of research. The research projects we are funding are on the cusp of completion, and are in their critical and final stages, so it is so important that we achieve this goal as the research cannot continue without it. We have a series of ultrasound studies, which have been working towards the development of new ground-breaking ways to measure blood flow to premature babies’ vital organs.
Evan at seven days old
Photograph supplied by Sophie Smith
We also have our paracetamol study, which has shown that giving paracetamol to premature babies soon after birth can help their cardiovascular system adapt to newborn life. This exciting breakthrough is in its final stages of analysis before being ready to be shared worldwide through presentations and publications.
Before Covid-19 we were also aiming to raise another $100,000 for one more state-of-the-art Baby Leo Incubator for the Royal Hospital for Women. This is a technologically advanced incubator that has been described as ‘the next best thing to the womb’. Among other things it means that babies needing surgery can be operated on from within the incubator without having to be moved to an operating table. For an extremely fragile premature baby this can make all the difference to the outcome.
During this pandemic all the needs of NICU are still there and then some so we can’t afford to put our feet up for the year and wait until next year because there is so much work to do for neonatal wards. We now it’s a difficult time so donations are more gratefully received than ever.
What is the most rewarding part of Running for Premmies?
Definitely for me the most rewarding part of RFPB is when I get to meet the babies who’ve directly benefitted from the lifesaving equipment we’ve provided and knowing that something really good has come from my Henry, Jasper and Evan’s lives.
There are so many stories I could tell you. Last year I met Charlotte. Charlotte was born at 26 weeks severely growth restricted and weighing only 498g. She spent her first four months in a new giraffe humidicrib, attached to the new advanced monitoring system and using the very latest Nava ventilator to support her underdeveloped lungs. All equipment was provided by RFPB and equipment which, had it been available in 2006, may have saved the life of my baby Jasper.
Actually meeting and holding this tiny little girl, while listening to her parents talking with great excitement about their plans for her upcoming first birthday party and knowing that my little boys had played a part in helping this precious little baby girl to reach this happy milestone, was really amazing.
Sophie holding baby Henry
Photograph supplied by Sophie Smith
It is also very special for me when people join me to run in memory of their own baby or babies who have died. People have shared with me that RFPB has given them the chance to share their grief with others, and how running in their baby’s name to give other babies a better chance has helped them heal.
It is rewarding to know that RFPB is no longer just about my Henry, Jasper and Evan. That now RFPB celebrates so many more prematurely born children, living and lost. I always tear up at the start of a race when I look around and see the backs of so many shirts with the name of so many babies and children who people are running for.
What do you do to prepare and unwind afterwards on the day?
The lead up to our Sydney Morning Herald Half Marathon is huge - last year we have 450 runners. We organise a team dinner the week of the race, and team training goes for four months leading up to the race. I have a stall at the expo for the three days leading up to the race which I love as I get to talk to thousands of runners picking up their race bibs and tell them about our charity. We also shake tins for donations and I’m always amazed by people’s generosity.
On the morning of the race we meet for a team photo at 6am which is super exciting. The energy is amazing with everyone in their team uniform.
In the park after the race we have a meeting area with physics to give us rub downs, and snacks for runners. And in the afternoon, we hold an after party.
After this race each year I usually try to take a few days off to spend with my boys. We often get away for a family holiday straight after the race.
What is your favourite story from past runs?
My favourite stories are when people join us who have never run before and are self-professed ‘non-runners’ and tell me that if it wasn’t for this cause they would never have run a half marathon. When they join in February they can’t even run around the block, but they stick to the training program and seeing them cross the finish line on race day is absolutely the best.
And this year I’m really excited about Tara joining my team. I met Tara and her husband and their tiny baby Grace two years ago in Centennial Park. We were having a team training session and Tara and her husband were taking their daughter for her first ever walk after bringing their daughter home from hospital. Grace was born at 23 weeks with a slim chance of survival.
Ash and Sophie with baby Jasper
Photograph provided by Sophie Smith
They wanted to meet me to thank me for the machines that saved their daughter’s life. I bumped into Tara again a few weeks ago and saw Grace now as a cheeky and happy two-year-old. When I told Tara we were fundraising for a Baby Leo Incubator this year Tara told me she’d take the challenge and run the Sydney Morning Herald relay as it was the RFPB funded Baby Leo that Grace was using when she had lifesaving surgery at 10 days old.
Tara has now teamed up in a relay team with Dr Meredith Ward, who is one of the neonatal team who saved Grace’s life. This has to be my favourite story in 13 years.
It’s particularly poignant for me people on our team who have triplets who have used our equipment and that is always really poignant to see these little trios growing up. To know that our babies helped them to get through.
It has really helped me through my own grief of losing my babies, just knowing that it was such a terrible tragedy to lose all three of them but something so good has come from that tragedy. For me it helps 13 years on to have Henry, Jasper and Evan as part of my everyday life. They’re my reason. Everything I do is about them, and that helps me and helps them live on in my family.
How have you been training this year?
This year I am undergoing my usual virtual training. We have 16 weeks of free training available online to competitors. We have amazing people who offer their services for free to prepare us for the race. It’s always been a virtual service and builds up your strength across the weeks until you can reach 21 kilometres if that’s your goal.
It’s fantastic to see the achievement of the people that couldn’t believe that they could run 21 kilometres and also it means that crossing the finishing line with Running For Premature Babies means that you’ve transformed that achievement into something even bigger because you’ve helped to save lives.
We are asking people to share the link to the virtual run in the lead up to May, we’re really hoping for 500 participants this year to help us create a story. Anyone who is running for a child who was born prematurely or has passed away.
On the back of people’s shirts, they can have the names of their baby or someone else’s baby. Seeing the names of babies living and lost on the day is so moving. There is a real sense of camaraderie in our team, you are never far from another purple shirt while you run. On race day the purple shirt gives people the extra energy to compete in a long-distance race.
Is there anything else you would like people to know in the lead up to the virtual race?
We’d love people to join our virtual run. But there are other ways to support our cause. You can create your own challenge and set up a fundraising page on our website - we’ve had people doing everything from a five kilometre fun run to running a 150 kilometre ultra-marathon in the French Dolomites. This year we have two Bondi lifeguards swimming the English Channel for our cause, raising funds for a ventilator.
You can become a regular giver with a regular monthly or annual tax-deductible donation. You can also create a fundraising page for an upcoming celebration or milestone - a birthday, wedding, baptism, birth and ask friends for donations in lieu of gifts. Or you can buy a copy of my memoir ‘Sophie’s Boys’. The memoir can be bought directly from me for $25 each or $34 including postage.
Or you can simply sign up for our virtual run without making a donation or fundraising. In these difficult times we just want everyone to lace up their runners for our cause to celebrate prematurely born children living and lost.
Also, you can follow us on social media. Our events will be back later this year - we have teams not only in the Sydney Morning Herald Half Marathon half but also the City2Surf in Sydney, the runs in Brisbane and Gold Coast and we also hold our own kids’ fun run each year in Sydney and Brisbane.
We love it when prematurely born children join us at these events. Following us on social media will keep you in the loop with all our events and stories.
What is your favourite thing to do at home with your sons during isolation?
Apart from the difficulty of juggling work and home schooling, I’m really enjoying the slower pace of life. We’re used to always rushing and I love that now we have the time to play board games, cook together and even learn new skills. We are all currently knitting a scarf together to give to Owen and Harvey’s nana, and we would never have done this without lockdown.
How to join:
To find out how you can join Sophie and Running For Premature Babies, head to their website: www.runningforprematurebabies.com or click on the link to the virtual run here: https://bit.ly/RFPBVirtualRun
You can also find more information on Running For Premature Babies social media.
Instagram: @runningforprems
Facebook: @runningforprematurebabies
Use the tags #rfpbvirtualrun #runningforprematurebabies #abetterchanceofsurvival
You can purchase a signed copy of Sophie’s incredibly moving memoir ‘Sophie’s Boys’ by following this link: https://www.runningforprematurebabies.com/sophies-boys
All profits from the sale of Sophie’s book go to Running for Premature Babies.
Sophie breastfeeding Jasper in the NICU
Photograph provided by Sophie Smith