Devastated influencer mum of ‘Little Lulu Love’ reveals daughter, 6, has died in her arms after brave health battle

A HEARTBROKEN influencer mum has described herself as “utterly broken” as she revealed that her six-year-old child died in her arms after a lifelong fight with a rare health condition.

Mum Erin Oudshoorn shared Luella “Lulu” Oudshoorn’s journey with a rare form of epilepsy called West Syndrome with over 24,000 Instagram followers.

She announced her daughters death with husband Dave in a tearjerking post on Wednesday.

The Australian influencer wrote: “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.”

It comes after months of silence from the account, where she had written that the child had contracted pneumonia and had been seriously ill for months.

She wrote: “For most of this year Lulu has been significantly unwell with a very bad cough, extreme lethargy, low appetite, temps of 39+, resulting in missing weeks of school and essential therapies in order to help maintain her skills.”

The mum and daughter Instagram account, called “Little Lulu Love” touched the lives of thousands before the six-year-old’s tragic death.

Tributes flooded in for little Lulu, including from the Tiny Hearts Foundation, which said it was “deeply heartbroken” by the news.

The organisation said: “We followed Lulu’s journey and watched you fight for her with everything you had.”

 “Even in the middle of your own pain, you shared her story openly with us to help other families, and because of that generosity, other children were diagnosed earlier and lives were changed. There are no words.”

Lulu was diagnosed with West Syndrome at just 11 weeks old.

The disease has no cure, and causes severe developmental delays.

Little Lulu suffered 250 seizures a day at some points, and was unable to talk, walk or stand up on her own.

In 2023, mum Erin founded the Lulu Love project.

Her fundraising efforts raised nearly half a million dollars for Epilepsy Action Australia over just two years.

And little Lulu became a leading advocate for childhood epilepsy.

Mumfluencer Marcia Leone said Erin had worked as a fierce advocate for the condition, calling her a “perfect mum”.

She said: “Watching your strength, your persistence, and your love has been truly inspiring. The most perfect mum to your darling girl.

“Lulu was an angel on Earth, and her life and legacy will live on.