Influencer Erin Oudshoorn’s daughter Lulu dies aged six after rare epilepsy diagnosis

Lulu was diagnosed with West syndrome when she was 11 months old

Influencer Erin Oudshoorn announced the death of her six-year-old daughter, Lulu, on Instagram (Instagram/little.lulu.love)

Australian influencer Erin Oudshoorn has announced the death of her six-year-old daughter, Lulu.

Oudshoorn shared a devastating tribute to her daughter on the Instagram page where over the years, she chronicled Lulu’s experience with a rare form of epilepsy called West syndrome.

“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 in a post shared Tuesday. The post’s picture showed Oudshoorn and her husband holding little Lulu’s hand.

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

Oudshoorn previously shared how Lulu was diagnosed with West syndrome, also called infantile epileptic spasms syndrome, when she was just 11 months old. West syndrome is a form of epilepsy that develops in babies under two years old. Doctors told Oudshoorn that Lulu’s condition was incurable, and said they did not believe her brain had formed properly in utero.

Influencer Erin Oudshoorn announced the death of her six-year-old daughter, Lulu, on Instagram (Instagram/little.lulu.love)

She dealt with spasms and seizures throughout her life, which Oudshoorn described on a podcast as “really brutal” for their family, including Lulu’s younger brother.

“Lulu suffers from a very rare and catastrophic form of epilepsy,” the mom said on the Mummy Village podcast in March 2023. “The seizures are brutal, to be honest. She was diagnosed very young, at 11 months of age.”

She explained: “I didn’t really know anything about epilepsy. I assumed that we would find seizure freedom and seizure relief with medication. Unfortunately, Lulu has tried and tested about 15, and [nothing worked]. The doctors also can’t find a cause for her epilepsy, so she’s left seizing all day every day and it is absolutely barbaric to watch.”

Oudshoorn developed a following under her handle @little.lulu.love, where she documented Lulu’s fluctuating health with daily updates and launched the Lulu Love Project to raise awareness for West syndrome.

Tributes to Lulu from devastated followers poured in under Tuesday’s post, as one Instagram user wrote: “I couldn’t sleep a wink last night thinking about you. I can’t possibly begin to imagine how you are feeling and how shattered you and Dave are. You are such an incredible parents who showed Lu unconditional love and support and I’m just so so sorry this has happened. Rest in eternal love and peace Lu, forever 6 xxx.”

Fellow family influencer Brittany Noonan commented, “I am so incredibly sorry Erin , this is the most heart shattering news. No words will ever be enough. My heart and thoughts are with you and your beautiful family. Lulu truly touched my heart and I thank you for sharing her story with us. You are one amazing mother forever advocating for her through everything she endured. I’ll never forget your beautiful girl Lulu. May she rest easy.”