Letter to the Editor: Elijah, now 6, continues to defy odds as he battles lissencephaly

August 29, 2024 | By Muddy River News

Elijah Tarpein sits on the lap of his sister, Mackenzie, during a recent trip to Tanganyika Wildlife Park in Wichita, Kan. At left is Elijah's sister, Avayha. At right are Elijah's brother, Isaiah, and his mother, Amy. | Photo courtesy of Amy Tarpein

I am sharing important news regarding Lissencephaly Awareness Day on Sept. 8. The City Council in Quincy is scheduled to sign a proclamation to honor this day during its Sept. 3 meeting. Additionally, the Memorial Bridge will be illuminated in purple on Sept. 1 to raise awareness for lissencephaly.

Elijah’s Baby Bucket List is a heartwarming social media movement that aims to raise awareness about lissencephaly while helping Elijah Tarpein, a courageous 6-year-old, live life to the fullest. Despite being born with lissencephaly, a rare and terminal genetic condition causing seizures and spastic quadriplegia cerebral palsy, Elijah continues to inspire many with his resilience and spirit.

Elijah has defied the odds by celebrating his sixth birthday in January, surpassing earlier expectations. His bucket list adventures, including riding a mountain coaster in Pigeon Forge, Tenn., visiting Graceland and taking his first steps at Bellarmine University in Louisville, Ky., showcase his determination and zest for life.

Elijah’s Baby Bucket List has gained significant traction on various social media platforms, attracting more than half of a million followers worldwide. Through Elijah’s infectious laughter and smiles, he spreads joy and positivity, touching the hearts of many.

Elijah’s story, featured across TV, radio, print and online platforms, resonates with a global audience. His unwavering joy and pure love serve as an inspiration to all who encounter his journey.

As Elijah’s experiences continue to uplift and inspire, we aim to offer hope, comfort and encouragement to individuals facing similar challenges. We aim to emphasize the significance of cherishing every moment and fostering meaningful connections with loved ones amidst life’s adversities.

To learn more about Elijah and our cause, please visit Elijah’s Baby Bucket List

Amy Tarpein
Program Coordinator, The Inside Edge
Founder, Elijah’s Baby Bucket List
Quincy, Illinois