Influencer Erin Oudshoorn 6-Year-Old Daughter Lulu Passes Away

Influencer Erin Oudhshoorn is heartbroken after the passing of her 6-year-old daughter, Lulu, who had been battling a rare form of epilepsy known as West Syndrome. Erin took to her social media on January 27, 2026, to share the devastating news with her followers, revealing that her daughter passed away peacefully, surrounded by loved ones.

On Instagram, Erin shared a touching photo of herself holding hands with Lulu and her husband, accompanied by an emotional caption:
“6 years, 3 months, 29 days. 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. Dave and I are just utterly broken. There simply aren’t enough words to express our agony. Our baby girl is gone.”

Lulu was diagnosed with West Syndrome at just 11 months old. Erin documented her daughter’s challenging journey with the rare epileptic disorder, which causes severe seizures, developmental delays, and infantile spasms. In a blog post, Erin shared the difficulties Lulu faced:
“At almost three years old, she has daily seizures, global developmental delay where she cannot walk, independently stand or independently feed herself, and is non verbal. It has been nothing short of a horrific journey so far as we have been unable to obtain seizure control or freedom.”

Explaining the condition further, Erin noted that West Syndrome affects approximately 2,500 children globally each year, characterized by hypsarrhythmia (abnormal brain waves), developmental delay, and infantile spasms. Lulu sometimes experienced over 200 spasms in a single day, also known as jack-knifing, a terrifying symptom that Erin openly shared with her followers to raise awareness.

Through her social media posts, Erin documented Lulu’s daily life and medical challenges, giving the public insight into this rare condition. Lulu’s Instagram account had over 23,000 followers who mourn the loss of the young girl, whose courage and story touched countless hearts around the world.