A Maitland couple is turning personal loss into action, taking on a major physical challenge to raise funds and awareness for a rare newborn condition.
Emily and Sam Anderson will run up to 110 kilometres across the weekend of 31 January and 1 February at Stockton Foreshore.
And, they’re determined to amass money for Neonatal Alloimmune Thrombocytopenia (NAIT) research through Sleapy’s Foundation and Monash University.
NAIT is a unique blood disorder where a mother’s immune system attacks her unborn or newborn baby’s platelets, leading to dangerously low levels.
The event, entitled Run for Rui, honours the life of Rui Augusto, the son of their close friends Sarah and Marcio, who was born on 13 July 2025.
Sadly, the toddler spent just 25 days with his family before passing away due to NAIT.
“I’ve known Marcio, Rui’s dad, since I was three,” Sam explained.
“We’ve always been best friends and we’ve grown up together.
“To see what they went through, and how strong both Marcio and Sarah have been, has pushed me to do this for them.
“They’re trying to ensure this unfortunate circumstance doesn’t happen to other families.
“And, that’s the reason why I’m 100% behind it.”
While the Andersons have three children of their own, Emily said this experience had “really opened their eyes”.
“We knew nothing about NAIT before the tragic loss of Rui,” she told the Newcastle Weekly.
“I think the most confronting thing about the disease is that Marcio and Sarah had a beautiful, little, healthy-looking boy.
“And, they still didn’t know until the second or third day of him being alive that he had the condition.
“Unfortunately, he was basically terminal.
“What they had to go through in the two or three weeks of his life was horrible.
“It was inhumane to watch parents going through what they went through.
“Monash University needs $25,000 to get the research moving again to make this preventable, which is what is driving this run.
“I think Marcio and Sarah’s goal is to make this preventable and become a mandatory test when you fall pregnant.
“That’s the big goal to make it preventable and never happen again.
“The opportunity to jump on board and participate was a no-brainer.
“When someone you love goes through something like this, you can’t do much.
“So, this was the one thing that we sort of could do, to help get that 25K and raise awareness.”
The 110-kilometre distance is symbolic.
The weekend will feature multiple runs of varying lengths, including one over 13km to mark the day Rui was born; and two back-to-back, 25km each, on the Sunday morning representing the 25 days he lived and the year he was born.
“We’re not running in teams,” Sam explained.
“My personal goal is to do as much as humanly possible with Marcio.
“I’ve been doing a lot of long running with him over the past month including regular 20-25km runs together.
“The hardest thing is going to be when they basically start every four hours.
“On Sunday, one begins at 6am, with the other at 10am… to physically do 25 kilometres, stop and go again is probably going to be the biggest challenge.
“So, we’ll just see how the body holds up and do as much as we both can.”
Participants can choose to run as much or as little as they like, with the Andersons encouraging people of all fitness levels to get involved.
“Everyone is running individually but there’s absolutely no pressure on anyone to run the full distance,” Emily said.
“I’m actually quite keen and excited.
“I know H events, who have kindly let us jump on board their track and to use all their facilities, always plan for a good day.
“We’re tying it in with the Stockton Island Triathlon Festival, where there’s going to be quite a few people running, so I’m expecting the vibes to be high.
“The weather’s definitely going to test us, being the end of January.
“But, hey, if it’s what we’ve got to do to show that we’re there to support and raise as much as we can, then we’ll do it.
“You just gotta get up and go.”
Sam explained that seeing the strength from his best friends to navigate life after losing their son had been his driving force.
“Watching someone you love go through something like this – not moving on but learning how to live with it – has been incredibly powerful,” he said.
“They still have their little girl, Ada, who turns five next week, and she relies on her parents’ bravery every single day.
“Having to explain to her the loss of her little brother, and then explain it again to family and friends, the strength they’ve shown is unbelievable.
“That’s been my driving force to train for this run; and it’s what will get me across the finish line.”
Since announcing the fundraiser, the couple said the support from the community had exceeded expectations.
“It’s been huge and really positive,” Sam added.
“We’ve had friends and family from far and wide jump on board, donating and signing up for the run, which we love.
“People are really willing to test their physical limits for this cause.
“We’ve got multiple sponsors on the back of our Run for Rui shirts.
“The goal is $25,000… and I honestly think we are going to smash it.
“There has been nothing but support – everyone just wants to help get it done.”
For the Andersons, it’s about more than fundraising – it is ensuring Rui’s short life creates lasting change.
“This run is something that can carry on in the years to come and keep his legacy alive,” Emily said.
“The main goal is making sure no other family has to go through this heartbreak.
“Sam and I will push as hard as we can to support Sarah and Marcio.”
They also hope the fundraiser will spark wider awareness and conversations about NAIT, a condition many parents have never heard of.
“Just seeing what such a young family went through will hopefully get people talking,” Sam said.
“It’ll have them asking: ‘How do we prevent this from happening to us or our children?’
“I’ve got three daughters and I never want them to go through this when they have their own children.
“That’s what it keeps coming back to – it’s preventable.
“I never want to see anyone go through what our best friends have had to endure and, hopefully, by raising awareness, we can make sure fewer families ever have to.”
The pair is encouraging the community to be involved in any way it can, whether through donating, signing up to run or simply sharing the campaign online.
RUN SCHEDULE
Saturday 31 Janurary:
• 6.30am – 13km run
• 8.30am – 7km run
• 10am – 25km run
• 2pm – 7km run
• 3.30pm – 8km Family Fun Run (500m track, 16 lap relay shared between family groups)
Sunday 1 February:
• 6am – 25km run
• 10am – 25km run
The run will take place alongside the Stockton Island Triathlon Festival (in partnership with H Events) and all money raised will be collected by Registered Charity, Sleapy’s Foundation and directed to the NAIT research at the Monash University.
- The Newcastle Weekly is a media partner of Sleapy’s Foundation
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