Australian influencer Erin Oudshoorn is mourning the death of her 6-year-old daughter, Luella “Lulu.”
“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,” Oudshoorn wrote via Instagram on Tuesday, January 27. “Dave and I are just utterly broken. There simply aren’t enough words to express our agony. Our baby girl is gone.”
Oudshoorn ran an Instagram page called “Little Lulu Love,” documenting her daughter’s battle with a rare form of epilepsy called West Syndrome. (According to the Cleveland Clinic, West Syndrome is a form of infantile spasms and seizures that usually start in babies between 3 and 12 months old.)
Lulu’s type of epilepsy was incurable. Oudshoorn previously opened up about her daughter’s health during a March 2023 episode of the “Mummy Village” podcast.
“Lulu suffers from a very rare and catastrophic form of epilepsy,” Oudshoorn said. “The seizures are brutal, to be honest. She was diagnosed very young at 11 months of age.”
According to Oudshoorn, coping with Lulu’s diagnosis was “really brutal” for her entire family.
“I didn’t really know anything about epilepsy. I assumed that we would find seizure freedom and seizure relief with medication,” Oudshoorn explained. “Unfortunately, Lulu has tried and tested about 15, and [nothing worked]. The doctors also can’t find a cause for her epilepsy, so she’s left seizing all day every day and it is absolutely barbaric to watch.”
Oudshoorn further noted that Lulu’s doctors believed “her brain didn’t form properly in utero.”
“So, structurally, her brain is not complete,” she said. “All those tiny little folds in the brain? They assume that some of those are too wide or too narrow, which interrupt the neuro pathways and the messages to the brain. … It’s constantly in seizure status.”
Oudshoorn started sharing Lulu’s health journey via social media eight months after her diagnosis.
“Behind closed doors, we were really fighting an uphill battle,” Oudshoorn said of deciding to share Lulu’s story online. “There’s an element of shame — but not shame of her. There’s all this head noise that comes with a diagnosis like this from a social perspective … [and] it just became really cathartic for me.”
Lulu celebrated her 6th birthday just five months before her death.
“The Princess is SIX! This year was the first in a long time that actually felt exciting,” Oudshoorn wrote via Instagram in September 2025. “Lulu was in good spirits, the weather was perfect and we had our nearest and dearest help celebrate her. We all had the best day and just simply loved having people surround her and give her nothing but love.”
She continued, “Lulu, my darling, we absolutely adore you. You honestly have no idea how much we love you. I hope the next six just get better and better. Our world is a better place, having you in it. Happy 6th Birthday my sweet, sweet girl.”
In addition to her parents, Lulu is survived by her younger brother.
