Influencer Erin Oudshoorn Mourns the Loss of Her 6-Year-Old Daughter Lulu After a Courageous Health Battle

28 January 2026

Influencer Erin Oudshoorn shared devastating news with her followers and the global online community on January 27, 2026, announcing that her six-year-old daughter, Luella affectionately known as Lulu, passed away peacefully in her arms after a long, heartbreaking struggle with a rare and severe form of epilepsy. Lulu’s death ended more than six years of fierce determination, love and public advocacy by her mother, who had spent much of that time documenting her daughter’s life and raising awareness about the challenges faced by families affected by such catastrophic childhood conditions. The announcement, made on the Instagram account @little.lulu.love that Erin created to chronicle her daughter’s health journey, became an emotional moment shared by thousands online who had followed Lulu’s story and offered support throughout the years.

Erin’s grief-filled message was simple and raw in its honesty: “It is with the most painful, shattered heart to share that our darling Lulu passed away peacefully in our arms yesterday, surrounded and profoundly loved on by all of her extended family.” She and her husband, Dave, wrote that they were utterly broken by the loss, adding that no words could truly capture the agony of saying goodbye to their child. The post quickly filled with condolences, heartfelt tributes and memories shared by followers, friends and parents who had been touched by Lulu’s journey.

From the start of Lulu’s life, Erin and her family were confronted with overwhelming medical challenges. Lulu was diagnosed with a rare and devastating form of epilepsy called West syndrome when she was just 11 weeks old, an early onset that set the tone for a childhood marked by frequent seizures, developmental delays and complex care needs. West syndrome is characterised by infantile spasms and abnormal brainwave activity and can lead to severe cognitive and physical disabilities, conditions Lulu lived with each day of her young life. In many cases, doctors are unable to fully control the seizures despite extensive treatment efforts, and for Lulu the road to relief always remained elusive.

In a blog post Erin wrote for Epilepsy Action Australia years earlier, she explained that by the age of three Lulu was experiencing daily seizures, had global developmental delay and was unable to walk, stand independently or feed herself. She was also non-verbal, and her medical team had been unable to achieve seizure freedom despite multiple therapies and medications. These realities, described candidly by Erin in her public posts, offered followers a rare and unfiltered look at the daily struggles and emotional realities of raising a child with an intractable neurological condition.

Despite the profound challenges, Erin and Dave’s love and devotion for Lulu never wavered. Erin’s Instagram account, and the accompanying Lulu Love Project, became platforms not only for updates on her daughter’s condition but also for education and advocacy. Through regular posts documenting how many days had passed since Lulu’s diagnosis and snippets of her daily life, Erin built a community of supporters who cheered the small victories, offered prayers during difficult times and found solidarity in shared experiences of parenthood, illness and resilience.

Lulu’s impact extended beyond her immediate family. Followers from across the world responded to the news of her passing with messages underscoring the light she brought to their lives during her short time. One friend of the family spoke of watching Lulu and her own daughter grow up together, recounting memories of laughter and play that felt both joyful and heartbreakingly transient. “My heart aches for their family during this unimaginable time. Lulu touched so many lives,” she wrote, reflecting a sentiment echoed throughout social media as parents, creators and followers expressed sorrow and solidarity.

The response to Erin’s announcement illustrated not just grief, but admiration for the courage she showed in sharing her daughter’s story so openly. Many commenters praised her for blending vulnerability with advocacy, noting that her willingness to document both the highs and the lows of Lulu’s life had helped raise awareness of a medical condition that few outside the health community ever hear about. For families facing similar challenges, Erin’s posts were more than updates; they were reminders that they were not alone in their struggle, and that love, connection and witness matter even in the most difficult journeys.

In the days following Lulu’s passing, messages of love continued to pour in. Supporters urged the Oudshoorn family to take comfort in the memories of their daughter’s life and the impact she had on so many despite her brief years. Advocates for childhood epilepsy also highlighted how stories like Lulu’s underscore the need for research, compassion and better resources for families affected by rare neurological disorders. The Lulu Love Project, born out of Erin’s devotion to her daughter, is likely to remain a touchstone for fans and families who have followed this story for years.

For Erin and her husband, the journey with their daughter was one of both immense challenge and immense love. In her tribute, Erin emphasised that Lulu had died surrounded by the people who loved her most, a peaceful end after years of medical struggle that was made bearable through unyielding family support. They spoke of their daughter as a source of light, laughter and strength a little girl whose presence had transformed their world and whose absence would be deeply felt by all who adored her.

As tributes continue and supporters rally around the family, the legacy of little Lulu will live on not only in the memories of those who knew her but also in the awareness raised through her story. The wider creator community, joined by families who have walked similar roads, has honoured her life with stories of courage, love and resilience reminders of how even the shortest lives can leave deep and lasting impressions on the hearts of many.