DSCC Participant’s ‘Baby Bucket List’ Spreads Awareness and Joy

February 28th, 2022

Elijah is in his stroller smiling

Elijah’s Baby Bucket List is a social media movement raising awareness about lissencephaly while helping 4-year-old Elijah live life to the fullest

Elijah is quite the celebrity and not just among his nine older siblings.

The 4-year-old was born with a rare, terminal genetic condition called lissencephaly.

The devastating diagnosis led his family to create a bucket list to fill Elijah’s lifetime with as much happiness and adventure as possible.

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

Elijah’s story has appeared on TV, in print and online. He also has thousands of followers from around the globe on platforms including 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,” said his mother, Amy Tarpein. “He is unconditional love and the embodiment of pure joy.”

“Choose joy”

Elijah with his mother, Amy
Amy Tarpein holds her son Elijah, who was born with a rare genetic condition called lissencephaly.

Elijah, a participant with the University of Illinois Chicago’s Division of Specialized Care for Children (DSCC), was born deaf. Approximately two months later, he was diagnosed with lissencephaly.

Lissencephaly occurs when the folds and grooves of the brain do not develop correctly. 

“It was devastating. The doctors said he wouldn’t live beyond the age of 2,” Amy recalled. “We were packed and ready to spend time at my sister’s. Instead, I loaded up the kids, left the hospital and we drove to Florida to see the ocean.”

During that trip, the idea for Elijah’s Baby Bucket List was born.

 “It can all be really hard, but we decided that we could either sit around and feel sorry about things or choose to give Elijah the best, God-filled life possible while he’s here. We decided to choose joy, be grateful, encourage others and hope,” Amy said.

Through “Elijah’s Baby Bucket List”, the family shares inspirational messages, videos and updates as they work through experiences on Elijah’s bucket list.

“We’ve shared about the first time he heard his sister sing, visits to the hospital and doctors, and our adventures to the Morton Arboretum, Beyond Van Gogh Exhibit, St. Louis Aquarium, hiking in the mountains, observing stars with a NASA scientist, picking pumpkins, playing in the leaves and a private screening of ‘Clifford the Big Red Dog,’” Amy said.

 “The focus is on Elijah doing or watching the things on the list and making as many memories and friends as possible!”

Other recent highlights include the city of Quincy declaring Sept. 8 as Lissencephaly Awareness Day and lighting the Bayview Bridge purple in his honor.  The Quincy Herald-Whig newspaper covered the special honor and Elijah’s story last fall.

“Our town came together to spread awareness and advocate for kids who are differently-abled. They lit up the bridge purple for Elijah, ” Amy said.  “I can’t express the emotion that overwhelmed me when we were also given a beautiful photo of the purple bridge taken by a local artist. The community support for my family has been amazing.”

“Be a light”

Elijah and his siblings share some snuggle time together on the couch
Elijah enjoys cuddle time with four of his older siblings at home.

Amy says her family loves Elijah fiercely. He has five grown siblings and four at home — Avayha, Isaiah, Kaylynn and Mackenzie – who dote on him.

They enjoy spending time together reading, studying, looking at and doing art, listening to music and cuddling.

“Avayha practices violin with him. She tells him the strings and what she’s playing. He loves music,” said Amy. “When we go to museums, she will read all of the descriptions and tell him about the exhibits and artwork.”

Elijah’s lessons include learning sign language and using his computer with an eye gaze device.

“He’s doing stuff they said he would never do,” Amy said. “He’s gotten really good at matching his letters, numbers, colors and shapes. He signs mom, dad, call, dog, no and will also sign ‘all done’ when he doesn’t want to get into his AFOs, the orthotics braces, because they are uncomfortable.”

Elijah’s sister Avayha wants to take him to Paris to drink lemonade and see the museums. She set up a lemonade stand to fund the trip, but the COVID-19 pandemic soon followed.

“Avayha asked if she could learn web design, so she could build up her own site,” Amy said proudly. “At 9-years-old, she studied and set everything up on her own. She’s determined to take him.”

Avayha’s website is Lemonade in Paris.

Amy calls caring for Elijah life-changing in the best possible ways.

“If someone had told me that five years ago, I would not have believed it. This was not the plan, but I love my life,” she said.

More to Explore

Elijah enjoys another hike with his family
Elijah with his mom, Amy, and four of his older siblings.

DSCC has worked with Elijah’s family since 2019. As Elijah continues to check off items from his baby bucket list, DSCC continues to help support his family’s journey.  

“DSCC collaborates with a wide range of agencies,” said Elijah’s Care Coordinator Kathy Thomas. “We’re here to listen and help families with children with complex health needs navigate insurance, health care and other resources.”  

DSCC’s Care Coordinators work countless hours helping families set and achieve their child’s goals based on their family’s unique needs.

Amy continues to plan new adventures for Elijah, stay positive and share the positivity with others.

“Elijah continues to defy the odds,” she said.

“Some things can’t be fixed, only carried! Life is full of things you can’t fix, no matter how well-intentioned you are. God, your higher power or whatever you believe in, always sends someone. I can’t explain half the stuff that happens in our lives, but we are braver together. This was not my plan, but I am truly blessed to be his momma.”

To learn more about Elijah and lissencephaly, follow Elijah’s Baby Bucket List on Facebook or visit elijahsbabybucketlist.com.