A six-year-old girl born with a rare form of epilepsy whose parents raised hundreds of thousands of dollars and campaigned for greater awareness of the incurable condition has died.

Luella Oudshoorn – known as Lulu – captured hearts around the world as her mother Erin shared her daughter’s story on the little.lulu.love Instagram account.

Ms Oudshoorn and her husband Dave announced Lulu’s death in a heartbreaking post accompanied by a picture of their hands clasped together on Wednesday afternoon.

‘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 wrote.

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

Lulu, who suffered from Lennox-Gastaut Syndrome, was six years, three months and 29 days old.

Lennox-Gastaut Syndrome is a complex and severe childhood-onset form of epilepsy characterised by multiple and concurrent types of seizures.

Little.lulu.love followed Lulu’s daily struggles as she and her parents dealt with her debilitating condition.

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Luella Oudshoorn – known as Lulu – captured hearts as her mother Erin shared her daughter’s story on the little.lulu.love Instagram account. Lulu is pictured with her mother

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Ms Oudshoorn and her husband Dave announced Lulu’s death in a heartbreaking post accompanied by this picture on Wednesday afternoon

A GoFundMe appeal established four years ago to raise money to support Lulu and her family reached $38,107, surpassing a target of $30,000.

Ms Oudshoorn also set up the Lulu Love Project, raising almost $500,000 for that campaign and Epilepsy Action Australia in just three years.

Both Ms Oudshoorn, who formerly worked in real estate, and her husband, a banking and funds management executive, became directors of Epilepsy Action Australia.

Lulu was just 11 weeks old when she was diagnosed with West Syndrome, an extremely rare type of epilepsy which results in severe developmental delays and has no cure.

At two, Lulu still could not walk or stand independently and was non-verbal.

Lulu experienced increasingly regular seizures and was subsequently diagnosed with Lennox-Gastaut Syndrome, one of the most severe forms of epilepsy.

Ms Oudshoorn was forced to give up work to become Lulu’s full-time carer and four years ago described the Lennox-Gastaut Syndrome diagnosis as ‘robbing us of the light that so fleetingly glimmers in our lives’.

‘Luella is the most gentle and sweetest little girl who is full of love,’ Ms Oudshoorn told the Daily Mail back then.

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Lulu, who suffered from Lennox-Gastaut Syndrome, was six years, three months and 29 days old

‘We see moments of her personality shine through but it depends on the day.

‘Every day is very different. For the most part, she’s a happy girl but the seizures aren’t good and cause destruction to the brain each time.

‘We do a lot of physical therapy in the hope she’ll reach those milestones but there’s a long and gruelling road ahead regardless.

‘She will need ongoing care for the rest of her life.’

Ms Oudshoorn successfully fought for extra funding from NDIS when she was told Lulu was not ‘disabled’ enough to receive more subsidised care.

The Oudshoorns tried dozens of anti-epileptic treatments without any success before turning to cannabidiol, a cannabis oil which relieved some of Lulu’s symptoms.

Ms Oudshoorn called the treatment a life changer, saying it improved Lulu’s cognitive ability and motor function despite the progression to Lennox-Gastaut Syndrome.

‘It’s not a cure but it does help as it allows her to maintain and retain things she does learn,’ Ms Oudshoorn told the Daily Mail.

‘At her worst, she would have up to 250 seizures a day, which have been reduced to 30-40 by using CBD oil.

‘She spent the first six to eight months of her life in and out of hospital so it’s something to try to avoid as much as we can.’