Influencer Erin Oudshoorn Announces Daughter Lulu’s Death at 6

Influencer Erin Oudshoorn announced the death of her daughter Lulu, after documenting Lulu’s journey with “incurable epilepsy,” in a post shared on Jan. 27.

“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.

“Dave and I are just utterly broken,” she continued, referring to her husband. “There simply aren’t enough words to express our agony. Our baby girl is gone.”

Oudshoorn ran an Instagram page dedicated to documenting her daughter’s experience with a rare form of epilepsy called West syndrome.

Writing in a blog page dedicated to when Oudshoorn ran the City to Surf 14k run to raise money for Epilepsy Action Australia, Oudshoorn explained how Lulu had been diagnosed at only 11 weeks with West syndrome.

“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 wrote at the time. “It has been nothing short of a horrific journey so far as we have been unable to obtain seizure control or freedom.”

Since then, Oudshoorn amassed a significant following online under the handle @little.lulu.love, where she documented Lulu’s journey living with her diagnosis, posting regular updates about her life, each with a day marker for how many days it had been since learning about her diagnosis.

PEOPLE has reached out to Oudshoorn.

Commenters expressed their grief and support for the Oudshoorn family in the comments.

“💔 I’m so deeply saddened to read this, Lulu is a light in our community forever, love you and always here friend,” wrote one user.

Another user, Elizabeth Dowd, shared a joint post alongside Erin, with a picture of her daughter Ava with Lulu, writing, “Ava’s sweet little best friend Lulu passed away yesterday, and our hearts are completely broken.”

“Lulu and Ava met last year at school, and through them we formed the most beautiful friendship with their family. I always imagined our girls growing up side by side, our daughters and sons, so close in age, sharing life together. It was the sweetest thing to watch them interact,” Dowd continued.

“My heart aches for their family during this unimaginable time. You never think this will be your journey. Lulu touched so many lives in her short time here. Fly high, precious girl. Let your angel wings soar. 🤍🕊️.”