URGENT UPDATE: Tragedy strikes as 6-year-old Luella Oudshoorn, affectionately known as Lulu, dies from a rare form of epilepsy. Her parents, Erin and Dave Oudshoorn, announced the heartbreaking news on social media just hours ago, leaving their followers and the world in shock.
Lulu passed away peacefully in her parents’ arms on January 28, 2026, surrounded by family. “It is with the most painful, shattered heart to share that our darling Lulu passed away peacefully in our arms yesterday,” Erin wrote, sharing their grief with followers of the little.lulu.love Instagram account, which documented Lulu’s journey with her severe condition.
Diagnosed with Lennox-Gastaut Syndrome, Lulu experienced debilitating seizures and numerous health challenges. Her parents dedicated themselves to raising awareness and funding for epilepsy research, successfully amassing $500,000 through the Lulu Love Project and other fundraising efforts. A GoFundMe campaign launched four years ago reached $38,107, surpassing its initial goal.
Lulu’s condition was particularly devastating; she was diagnosed with West Syndrome at just 11 weeks old, leading to severe developmental delays. Despite numerous setbacks, Erin and Dave became directors of Epilepsy Action Australia to advocate for better care and support for families affected by similar conditions.
Erin shared that their journey was filled with challenges, including fighting for funding from the NDIS when Lulu was deemed “not disabled enough.” The Oudshoorn family also turned to alternative treatments, including cannabidiol (CBD) oil, which significantly reduced Lulu’s seizures from 250 a day to around 30-40.
In a poignant reflection on Lulu’s life, Erin described her daughter as “the most gentle and sweetest little girl who is full of love.” The family has faced an uphill battle, with each day presenting new difficulties, yet they remained hopeful and committed to Lulu’s care.
As the world mourns Lulu’s passing, her parents urge others to cherish every moment with their children. “We are just utterly broken. There simply aren’t enough words to express our agony,” Erin wrote, emphasizing the love and support Lulu received throughout her life.
The Oudshoorn family’s story serves as a vital reminder of the challenges faced by families dealing with severe health conditions. Their advocacy has sparked conversations about epilepsy awareness and the importance of support for affected families.
Next steps include a continued push for improvements in care and funding for epilepsy research, as the Oudshoorns strive to honor Lulu’s legacy. The family encourages those who wish to contribute to the cause to support organizations dedicated to epilepsy research and advocacy.
Stay tuned for updates as the Oudshoorns share their journey and the impact of Lulu’s life on the community.
