UPDATE: A heart-wrenching mission is underway as the family of Rui Augusto, who tragically passed away at just 25 days old, embarks on a monumental 110-kilometre fundraising run to combat a rare but preventable condition known as neonatal alloimmune thrombocytopenia (NAIT). This urgent adventure begins during the Stockton Island Triathlon Festival on January 31 and February 1, and aims to ensure no other family suffers the same loss.
Rui was born on July 13, 2025, and loved dearly by his parents, Sarah and Marcio, along with his big sister, Ada. Tragically, he succumbed to a severe intracranial hemorrhage caused by NAIT on August 7, 2025. Determined to turn their grief into action, Marcio, alongside friends, is set to run a distance that symbolizes the brief but impactful life of Rui.
“Although Rui’s life was short, we wanted his legacy to live on and his life to have purpose,” Marcio stated. The family has already raised over $16,000 for the Sleapy’s Foundation, which will funnel resources directly into NAIT research at Monash University. With just 25 days remaining until the run, they aim to reach a goal of $25,000 to support critical research efforts.
NAIT occurs when a mother’s immune system attacks her unborn baby’s platelets, often leading to bleeding in the brain, and is frequently undiagnosed until tragedy strikes. “When we found out Rui was affected by NAIT, we had no idea what the condition was,” Marcio revealed. “The only active research in Australia is the Monash University NAIT Registry, which has been operating since 2009.”
As the family trains rigorously for the event, community support has been overwhelming. “We’re taken aback by the generosity shown by our sponsors and those who have donated so far,” Sarah expressed. The couple emphasizes the importance of funding for the NAIT registry, which has been maintained solely by passionate doctors and researchers since government funding ended in 2016.
“We understand that NAIT is a rare condition, but it’s vital for the next family affected,” Sarah noted. Without adequate funding, many cases may be missed, delaying essential research and treatment advancements. “Every little bit helps,” she added, encouraging public participation.
The community is invited to join the Run for Rui event by registering for any of the scheduled distances or by supporting runners at the Stockton foreshore. For those unable to attend in person, pledging a distance to run in their own area is welcomed.
“We can’t change what happened to Rui, but we can help raise awareness and funds to prevent other parents from experiencing the same heartbreak,” Sarah concluded. Donations can be made through their fundraising platform, as they strive to transform their grief into a beacon of hope for others.
This compelling story highlights the urgency and importance of funding for NAIT research, potentially saving lives in the future. Join the family in their quest for change, and support their mission to make a lasting impact.
