What condition did Lulu have?

Lulu had a rare and incurable form of epilepsy known as West syndrome.

How old was Lulu when she was diagnosed?

Lulu was diagnosed with West syndrome at 11 weeks old.

What were Lulu's health challenges?

Lulu experienced daily seizures and global developmental delays, affecting her mobility and ability to speak.

Home / Lifestyle / Influencer Mom's Heartbreak: Lulu Loses Battle

Influencer Mom's Heartbreak: Lulu Loses Battle

29 Jan

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Summary

Influencer Erin Oudshoorn announced her daughter Lulu's death on Jan. 27.
Lulu battled a rare form of epilepsy known as West syndrome.
The family shared Lulu's journey documenting her daily seizures and delays.

Influencer Mom's Heartbreak: Lulu Loses Battle

Influencer Erin Oudshoorn shared the devastating news of her daughter Lulu's passing on January 27. Lulu died peacefully in her family's arms, surrounded by love, after a courageous battle with an incurable form of epilepsy.

Lulu was diagnosed with West syndrome, a rare condition, at only 11 weeks old. For nearly three years, she experienced daily seizures and significant global developmental delays, impacting her ability to walk, feed herself, and communicate verbally. Her parents documented this challenging journey on an Instagram page.

The Oudshoorn family expressed their utter heartbreak and agony over Lulu's loss. They had been unable to achieve seizure control for their daughter, making their journey incredibly difficult. The announcement was met with widespread grief and messages of support from the online community and friends.