Australian social media influencer Erin Oudshoorn has shared the devastating news that her six-year-old daughter, Lulu, has passed away following a prolonged and challenging battle with a rare form of epilepsy known as West syndrome.
Heartbreaking Announcement on Social Media
Oudshoorn announced her daughter's passing in an emotional tribute posted to the Instagram account @little.lulu.love, where she had documented Lulu's health journey for years. The post, shared on Tuesday, revealed that Lulu died peacefully while surrounded by her extended family.
"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 alongside a poignant photograph showing her and her husband Dave holding their daughter's hand.
The grieving mother continued: "Dave and I are just utterly broken. There simply aren't enough words to express our agony. Our baby girl is gone."
Lifelong Struggle With Rare Epilepsy Condition
Lulu was diagnosed with West syndrome, medically termed infantile epileptic spasms syndrome, when she was just eleven months old. This severe form of epilepsy typically develops in children under two years of age and is characterised by frequent spasms and seizures.
Medical professionals informed the family that Lulu's condition was incurable, suggesting that her brain may not have formed properly during pregnancy. Throughout her short life, Lulu endured what her mother described as "really brutal" seizures that occurred daily.
Mother's Advocacy and Awareness Efforts
Oudshoorn developed a substantial following on Instagram through her candid documentation of Lulu's health fluctuations, providing daily updates about her daughter's condition. She also established the Lulu Love Project, an initiative aimed at raising awareness and understanding of West syndrome.
In a March 2023 appearance on the Mummy Village podcast, Oudshoorn explained the family's difficult journey: "Lulu suffers from a very rare and catastrophic form of epilepsy. The seizures are brutal, to be honest. She was diagnosed very young, at 11 months of age."
She revealed that Lulu had tried approximately fifteen different medications without success, and doctors were unable to determine the underlying cause of her epilepsy. "She's left seizing all day every day and it is absolutely barbaric to watch," Oudshoorn shared during the emotional interview.
Outpouring of Support From Followers
The announcement prompted an immediate flood of condolences from Oudshoorn's followers and fellow influencers. Heartfelt tributes filled the comments section of the Instagram post, with many expressing their sorrow and admiration for the family's strength.
One follower wrote: "I couldn't sleep a wink last night thinking about you. I can't possibly begin to imagine how you are feeling and how shattered you and Dave are. You are such incredible parents who showed Lu unconditional love and support."
Fellow family influencer Brittany Noonan commented: "I am so incredibly sorry Erin, this is the most heart-shattering news. No words will ever be enough. My heart and thoughts are with you and your beautiful family. Lulu truly touched my heart and I thank you for sharing her story with us."
The tragic loss highlights the devastating impact of rare childhood epilepsy conditions and the challenges faced by families navigating complex medical diagnoses with limited treatment options.
