Erin Oudshoorn announces death of daughter Lulu after rare epilepsy struggle

Influencer Erin Oudshoorn announced on Instagram Jan. 27 that her daughter Lulu has died, writing, "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." She added, "Dave and I are just utterly broken... There simply aren’t enough words to express our agony. Our baby girl is gone."

Oudshoorn had documented Lulu’s life online under the handle @little.lulu.love after Lulu was diagnosed at 11 weeks with a rare form of epilepsy called West syndrome.

On a blog post about running the City to Surf 14k to raise money for Epilepsy Action Australia, Oudshoorn described Lulu’s condition and care. In earlier updates she wrote that "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."

Oudshoorn previously said the family had been "unable to obtain seizure control or freedom." Commenters on her Instagram expressed grief and support: one user wrote, "💔 I’m so deeply saddened to read this, Lulu is a light in our community forever," and another, Elizabeth Dowd, shared a post with a photo of her daughter Ava and wrote, "Lulu touched so many lives in her short time here. Fly high, precious girl. Let your angel wings soar."

PEOPLE has reached out to Oudshoorn for comment.

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