Australian influencer Erin Oudshoorn has shared the news no parent ever wants to post, telling followers that her six-year-old daughter, Luella “Lulu” Oudshoorn, has died after a long fight with a rare and aggressive form of epilepsy. The mum, known online for documenting “Little Lulu Love,” described holding Lulu in her arms as she took her final breaths, calling herself and her partner “utterly broken” but determined to keep their little girl’s legacy alive.
For years, Erin has let strangers into the most intimate corners of her family’s life, turning her daughter’s medical battle into a platform for awareness and fundraising. Now, as tributes pour in and the epilepsy community rallies around her, the story of Lulu’s short life is resonating far beyond her corner of Instagram.
The heartbreaking announcement and Lulu’s final days
Erin Oudshoorn told her followers that her daughter Luella, affectionately known as Lulu, died in her parents’ arms after her body could no longer keep up with a relentless neurological illness. In her posts, the Australian influencer described a home filled with monitors, medications and emergency plans, and then, suddenly, a quiet that felt impossible to bear. She wrote that there “aren’t enough words” to capture the agony of losing a six-year-old child to a condition that had shaped every day of their lives, a sentiment echoed in coverage of the Luella announcement.
Friends and followers learned that Lulu had been “extremely unwell” for most of this year, with her mum explaining that the seizures and complications had escalated despite every treatment option they tried. In one account, Ms Oudshoorn is described as watching her daughter endure a level of suffering she called “absolutely barbaric to watch,” a raw description that underlines how severe Lulu’s condition had become by the time she died at age six in her mother’s arms, as detailed in reports on Lulu.
Who Erin and “Little Lulu Love” were to the online world
Long before the tributes, Erin had built a community around her daughter’s story, sharing daily life with “Little Lulu Love” to more than 24,000 Instagram followers. Her feed mixed hospital corridors with silly dress-ups, seizure diaries with birthday cakes, and it turned a complex medical journey into something people could understand and rally behind. Coverage of the account notes that Mum Erin Oudshoorn and Luella “Lulu” Oudshoorn used Instagram to show how a child with a rare illness could still radiate joy, with Little Lulu becoming a familiar name in the childhood epilepsy space.
Erin’s role stretched well beyond social media aesthetics, with epilepsy advocates describing her as a fierce campaigner for better understanding and funding. She is listed among the community voices for Epilepsy Action Australia, where Erin is profiled as a parent who turned her family’s struggle into advocacy and fundraising. Another profile notes that “Erin and her family continue to struggle to achieve seizure control for Lulu,” highlighting how the account was never just about cute photos, but about raising essential funds and awareness for a condition that was constantly threatening her daughter’s life, as explained in a separate epilepsy profile.
Lulu’s rare diagnosis and what West syndrome actually is
At the heart of Lulu’s story is a diagnosis that most people had never heard of before following her mum: West syndrome, a rare and severe form of epilepsy that typically affects babies under two years old. Reports on the family’s journey explain that Little Lulu had West Syndrome, a condition marked by clusters of seizures and developmental regression, and that her parents spent years chasing seizure control that never fully came, as outlined in coverage of West Syndrome. Medical explainers linked to Lulu’s case describe West syndrome as one of the most severe forms of epilepsy, often resistant to treatment and associated with long term disability.
Influencer Erin Oudshoorn has spoken about how the diagnosis landed when Lulu was still a baby, and how it quickly became clear that this was not a condition that would be “fixed” with a single medication. A detailed breakdown of her story notes that Lulu lived with a rare and incurable condition that caused repeated seizures and hospital stays, and that the family’s life revolved around managing this unpredictable illness, as described in a rare epilepsy overview. Another report, written by Carsen Holaday, notes that West syndrome usually appears in babies under two years old and can lead to lifelong challenges, a context that helps explain why Lulu’s parents were constantly juggling therapies and emergency care from her earliest months, as set out in a detailed account.
“Utterly broken” parents and a community trying to hold them up
In the wake of Lulu’s death, Erin has described herself and her partner as “utterly broken,” a phrase that has been repeated across coverage of the tragedy. One report recounts how Ms Oudshoorn wrote that there are simply no words for the agony of losing a child to such a brutal illness, and that the family’s home now feels like a shrine to a six-year-old who should still be there, as reflected in the way There are “not enough words” has been used to summarise her grief. Another piece describes the parents as “utterly broken” but still speaking about their daughter as a hero, someone who inspired donations and conversations that will outlast her short life, as captured in the tribute to the beloved six-year-old hero.
Support has poured in from other parents of medically complex kids, epilepsy advocates and fellow influencers who watched Lulu’s story unfold in real time. Mum blogger Marcia Leone, for example, publicly called Erin a fierce advocate for childhood epilepsy and said that “watching your strength” had changed how many people think about invisible illness, a sentiment shared in coverage of Marcia Leone and other supporters. Another report notes that influencer mum Erin has been described as a “star in agony” after her daughter’s death from a rare and incurable condition, with friends emphasising that her openness about one of the most severe forms of epilepsy has already helped other families feel less alone, as detailed in a separate Influencer profile.
Turning grief into a lasting legacy for childhood epilepsy
Even in the middle of raw grief, Erin has been clear that she wants Lulu’s impact to be “generational,” not just a wave of sympathy that fades with the news cycle. Reports on the family’s advocacy note that Erin and Lulu helped raise essential funds for epilepsy research and support services, and that their story has been used by Epilepsy Action Australia to highlight the realities of uncontrolled seizures in children, as outlined in the Erin and Lulu profile. Another piece on the beloved six-year-old fundraiser notes that her parents believe her impact will live on through the money raised and the conversations sparked about childhood epilepsy, a point made explicitly in the tribute that calls her an inspirational young fundraiser.
Coverage of the tragedy has also underlined how Erin’s influence extends beyond her own account, with multiple outlets describing her as an Australian influencer who has used her platform to spotlight one of the most severe forms of epilepsy. One report summarises the situation by stating that Australian Influencer Erin Oudshoorn announces daughter Lulu’s death at age six after an epilepsy battle, while another notes that Influencer Erin Oudshoorn announced the death of her daughter Lulu on Instagram, where she ran a page dedicated to her child’s life with West syndrome, as set out in separate Age and NEED TO KNOW summaries. Other write ups, including one by Carsen Holaday, frame Lulu’s story as part of a broader push to educate people about rare epilepsies that strike in infancy and can be fatal despite the best medical care.
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