Letter to the Editor: Rare brain malformation hasn’t stopped 5-year-old boy from enjoying life

Elijah Tarpein

Elijah Tarpein | Photo courtesy of Amy Tarpein

“Elijah’s Baby Bucket List” is a social media movement raising awareness about a rare brain malformation while helping 5-year-old Elijah Tarpein live life to the fullest.

Elijah is quite the celebrity, and not just among his nine older siblings. He was born with lissencephaly, a rare terminal genetic condition that causes seizures and spastic quadriplegia cerebral palsy.

Despite a grim prognosis that he wouldn’t survive past age 2, Elijah celebrated his fifth birthday in January. His single mother and siblings came up with a bucket list to ensure that Elijah’s life was filled with as much joy and excitement as possible. Elijah has accomplished many things that were once thought impossible for him. This year alone, he rode a mountain coaster in Pigeon Forge, Tenn., visited Graceland and even took his first steps at Bellarmine University in Louisville, Ky.

“Elijah’s Baby Bucket List” is dedicated to raising awareness about lissencephaly. It provides opportunities for Elijah to live his life to the fullest while spreading joy and making new friends and memories.  

Elijah’s story has appeared on TV, radio, in print and online. He has more than half a million followers from around the globe on social media platforms like Facebook, Instagram, YouTube and TikTok. His followers read about his latest experiences and enjoy videos of his infectious laughter and smile.

He’s always happy, always laughing. It’s hard to stay sad when he’s around. He is unconditional love and the embodiment of pure joy.

Elijah continues to defy the odds. Some things can’t be fixed, only carried! Life is full of things you can’t fix, no matter how well-intentioned you are. We hope to provide hope and comfort to those struggling with their faith during difficult times and highlight the importance of cherishing each moment and making the most of our time with loved ones, even in the face of adversity. We hope to inspire others who may be going through similar challenges and someday start a nonprofit to help other families like ours make memories. 

Friday, Sept. 8 is Lissencephaly Awareness Day. Quincy Mayor Mike Troup signed a proclamation for him during the Sept. 5 Quincy City Council meeting. The Bayview Bridge will be illuminated in purple on Friday, Sept. 8 to raise awareness for Lissencephaly.

You can find Elijah and all our links at elijahsbabybucketlist.com.

Amy Tarpein
Quincy, Illinois

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