The young daughter of a popular Australian influencer has died following a heartbreaking battle with epilepsy.

Luella, 6, passed away on Tuesday according to her mother Erin Oudshoorn, who shared the devastating news on the pair’s Instagram account little.lulu.love.

“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 on Wednesday.

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

Luella, otherwise known as Lulu, was diagnosed with West Syndrome or infantile spasms when she was 11 weeks old.

Her mother has been documenting Lulu’s journey with the disorder since she was a baby, with the Instagram account amassing more than 23,000 followers.

The last time Oudshoorn had posted on the account was on October 31 last year. Previous to that she had posted about the fact Lulu had been diagnosed with pneumonia and had been extremely unwell for several months.

“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,” Oudshoorn wrote.

Following the tragic news of Lulu’s death her family received an outpouring of love from supporters and followers, including the Tiny Hearts Foundation which said it was “deeply heartbroken”.

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

“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.”

Mum blogger Marcia Leone said Oudshoorn was a fierce advocate for childhood epilepsy.

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

“Lulu was an angel on Earth, and her life and legacy will live on. We could all see how deeply she was loved beyond measure by you and by Dave. Thank you for sharing her light with us.”

West Syndrome is a rare and severe form of epilepsy which involves seizures where the arms fling out as the infants knees pull up.

According to the Epilepsy Foundation, most children with infantile spasms develop intellectual disabilities later in life.

Even if the seizures do stop, children may also develop other kinds of epilepsy.

At five years old, Lulu was diagnosed with Lennox Gastaut Syndrome, which is characterised by seizures, developmental delays and behavioural issues.

As well as documenting Lulu’s health struggles and journey, Oudshoorn has become a leading advocate for childhood epilepsy, helping to raise thousands of dollars for Epilepsy Action Australia.