Influencer Erin Oudshoorn shares emotional tribute as 6-year-old daughter dies from rare form of epilepsy
A much-loved Australian social media star has broken the gut-wrenching news this week that her six-year-old daughter has passed away.
The tragedy befell parenting influencer Erin Oudshoorn and her husband Dave, who together were parents of their adorable daughter Luella - lovingly nicknamed 'Lulu'.
Taking to Instagram on Tuesday (27 Jan), the content creator provided her 24,000+ followers with an update, revealing that the youngster had previously been diagnosed with a rare form of epilepsy.
"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 began.
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"Dave and I are just utterly broken. There simply aren’t enough words to express our agony."
She added: "Our baby girl is gone."
In the caption, Oudshoorn also revealed that her daughter had lived for '6 years, 3 months, 29 days' before losing her lifelong health battle, gaining her 'angel wings' on 'day 2236'.
Luella had been diagnosed with West Syndrome at less than a year old, with doctors telling her mother they didn't believe her brain had formed properly in utero. The condition describes highly-specific branch of epilepsy that sees babies as young as three months old suffering spasms and seizures.
Despite doctors not yet having found a cure for West Syndrome, Oudshoorn constantly professed hope that her child would go on to live a happy life.
The mother-of-two - who also shares a younger son, Tom, with her husband - runs the account @little.lulu.love, through which she kept her fans in the loop with her baby girl's ever-fluctuating health.
"Lulu suffers from a very rare and catastrophic form of epilepsy," Oudshoorn explained on the popular Mummy Village podcast in March 2023. "The seizures are brutal, to be honest. She was diagnosed very young at 11 months of age."
"I didn’t really know anything about epilepsy. I assumed that we would find seizure freedom and seizure relief with medication."
She added at the time that the youngster had 'tried and tested' over 15 different treatments, to no avail.
"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."
Of the possible causes of Luella's condition, Oudshoorn also explained on the pod: "So, structurally, her brain is not complete. 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."
Following the child's heartbreaking passing this week, tributes have flooded Oudshoorn's social media comments.
"My heart and prayers are with you and your family," one fan gushed. "Little Lulu will forever be in our hearts. We are blessed to have known her.
"We love you Lulu."
Another added: "Absolutely broken for you both. Sending so much love and prayers to give you both strength, during this unimaginable time."
A third continued: "Erin, I’m so so sorry - sending all my love to yourself, Dave and Tom. My heart is utterly broken for you all. Rest in peace darling Lulu."
Topics: Parenting, Life, True Life, Real Life, Social Media, Australia
Rhianna Benson