The heartbreaking story of a six-year-old girl who captured global attention through her mother's social media campaign has reached its tragic conclusion. Luella Oudshoorn, affectionately known as Lulu, has passed away after a lifelong battle with a rare and severe form of epilepsy that defied conventional treatments.
A Family's Devastating Announcement
In an emotional social media post shared on Wednesday afternoon, Erin Oudshoorn and her husband Dave revealed their daughter's peaceful passing. The announcement was accompanied by a poignant photograph of their hands clasped together, symbolising both their unity and profound loss.
'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,' Erin wrote in the heartbreaking update. 'Dave and I are just utterly broken. There simply aren't enough words to express our agony. Our baby girl is gone.'
The Medical Journey That Touched Thousands
Lulu's medical challenges began when she was just eleven weeks old with a diagnosis of West Syndrome, an extremely rare epilepsy variant that causes severe developmental delays and has no known cure. By age two, she remained unable to walk or stand independently and was non-verbal.
Her condition progressed to Lennox-Gastaut Syndrome, recognised as one of the most severe childhood-onset epilepsy forms characterised by multiple concurrent seizure types. At her most vulnerable, Lulu experienced up to 250 seizures daily, though this was reduced to 30-40 through innovative treatment approaches.
Global Support Through Social Media
The little.lulu.love Instagram account, managed by her mother Erin, documented their daily struggles and triumphs, building an international community of supporters. What began as a personal journal evolved into a powerful awareness campaign that raised substantial funds for epilepsy research and support services.
Through dedicated fundraising efforts, the family established both a successful GoFundMe appeal that surpassed its $30,000 target and the Lulu Love Project, which generated nearly $500,000 for Epilepsy Action Australia within just three years. Both parents eventually became directors of the epilepsy charity, transforming their personal tragedy into a force for systemic change.
Treatment Battles and Care Challenges
Erin Oudshoorn abandoned her real estate career to become Lulu's full-time carer, describing the Lennox-Gastaut diagnosis as 'robbing us of the light that so fleetingly glimmers in our lives.' The family explored dozens of anti-epileptic treatments before finding partial relief through cannabidiol (CBD oil), which improved Lulu's cognitive ability and motor function despite the disease's progression.
'It's not a cure but it does help as it allows her to maintain and retain things she does learn,' Erin explained in a previous interview. The treatment represented a significant improvement from periods when Lulu spent six to eight months continuously in and out of hospital facilities.
The family also successfully challenged National Disability Insurance Scheme (NDIS) decisions when initially told Lulu wasn't 'disabled enough' to qualify for additional subsidised care, highlighting systemic barriers facing families with complex medical needs.
A Legacy of Awareness and Advocacy
At six years, three months and twenty-nine days old, Lulu's brief life created an outsized impact on epilepsy awareness and research funding. Her mother's description of her as 'the most gentle and sweetest little girl who is full of love' resonated with thousands who followed their journey.
Despite the daily challenges and what Erin described as a 'long and gruelling road ahead regardless,' the family maintained hope that physical therapy and innovative treatments might help Lulu reach developmental milestones. The reality of her condition meant she would have required ongoing care throughout her life, a responsibility her parents embraced completely until her final moments.
The global community that rallied around Lulu's story now mourns alongside her family, while the awareness and funds raised through their efforts continue to support epilepsy research and family support services across Australia and beyond.
