Influencer Erin Oudshoorn's 6-YO Daughter, Lulu Passed Away, She Was Diagnosed With Rare Epilepsy

Influencer, Erin Oudshoorn's 6-year-old daughter, Lulu passed away. She took to her social media and announced the death of her daughter. For the unversed, Erin's daughter, Lulu, was diagnosed with a rare epilepsy named West Syndrome. She was diagnosed first when she was 11 months old. On January 27, 2026, Erin took to her social media and revealed that her daughter passed away peacefully. Social media users offered condolences to the sweet soul. Erin took to her social media handles to document Lulu's journey with the rare form of epilepsy.

Erin Oudhshoorn's daughter, Lulu passed away at the age of 6

On her social media handle, Lulu's mother, Edin Oudhshoorn, posted a photo of holding hands with her daughter and husband, along with an emotional caption. In the caption, she announced the death of Lulu while adding that she and her husband are utterly broken. She further mentioned that Lulu has passed away peacefully, surrounding her loved and close ones. The comment section got filled with heartbreaking comments from the followers who used to follow the little one and her journey with her health battle. The caption from Erin, wherein she announced Lulu's death, could be read as:

"6 years, 3 months, 29 days. 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."

Erin Oudhshoorn talked about daughter, Lulu's rare health issue

In a blog post, Erin Oudhshoorn revealed that her daughter, Lulu, was diagnosed with this rare form of epilepsy at a very young age, when she was not even 1 year old. In the blog post, she further revealed that Lulu used to have daily seizures, where she couldn't even walk, independently stand or feed by herself. Erin, in the post, further mentioned that her daughter was even non-verbal. She further said that the entire journey has been a horrific one, as they couldn't obtain seizure control or freedom. Speaking more about the same, Erin Oudhshoorn mentioned:

"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. It has been nothing short of a horrific journey so far as we have been unable to obtain seizure control or freedom."

In another IG post, Erin Oudhshoorn revealed what West Nile Syndrome is. Sharing the post, Erin mentioned that it's a rare form of epileptic seizure disease, with which approximately 2500 children are diagnosed each year globally. She went on to reveal that the symptoms are of three kinds: hypsarrhythmia, which is abnormal brain waves which could be detected by an EEG, developmental delay and infantile spasms, which is a totally different thing than convulsive epilepsy.

Lulu used to have infantile spasms, and in the worst possible case, she used to have over 200 IS, one day. IS are small electrical shocks that happen in clusters. Edin shared a clip of Lulu having one of the IS, which was known as jack-knifing, while adding that back then, they had no idea about how horrific the situation could be.

Erin Oudhshoorn used to record Lulu's journey on social media and made people aware of this rare yet horrific health crisis. The little one's IG page had over 23K followers who are now left heartbroken over her passing at such a tender age. Lulu was seemingly in a school, and her mom often would drop cutesy videos of her while updating her fans about her journey.

We wish Lulu's family strength to deal with this tough time!

Also Read: Shirley Raines Had Health Issues? She Was Found Unresponsive, Daughter Had To Throw Rocks At Window

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