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.

DSCC Family Brings Apraxia Awareness to Central Illinois

May 13th, 2020

Eldon smiles while holding a framed copy of his city's Apraxia Awareness Day proclamation

Mandy Nicolaides is raising awareness about her son’s severe speech and communication disorder.

Mandy Nicolaides thought her son may never speak.

At 3 years old, he could say less than five intelligible words, she recalled.

Eldon knew what he wanted to say.  The message from his brain wasn’t connecting with his mouth muscles to make the right sounds.

Eldon was diagnosed with childhood apraxia of speech. It’s a motor speech disorder that makes it difficult for a child to plan the right mouth movements for speech.

With the right speech therapy, Eldon has flourished and is now able to speak full sentences at 4 years old.

Apraxia is one of the most severe childhood speech and communication disorders. Yet, it is often misunderstood or unfamiliar to the general public. Mandy is now working to raise awareness and share Eldon’s story.

Framed Apraxia Awareness Day Proclamations for the city of Normal and the city of Bloomington.

Mandy petitioned the city councils in Bloomington and Normal to declare May 14 Apraxia Awareness Day in their communities. McLean County will also make a proclamation for Apraxia Awareness Month in May. May is also Better Hearing and Speech Month.

Mandy believes it’s important to be a strong advocate for her child and educate the community about Eldon’s condition.

“It’s frustrating because a lot of people look at him and think he doesn’t know what he’s saying,” she said. “His receptive language is insane. His speech just sometimes comes out as gibberish, but he thinks he’s saying it perfectly clear.” 

Eldon was born with severe hearing loss in his right ear and now has a cochlear implant.

He began receiving Early Intervention services shortly after birth. He later enrolled with the University of Illinois at Chicago’s Division of Specialized Care for Children (DSCC).

As he grew, Eldon struggled to speak. Mandy at first thought he had a developmental delay.

One of his Early Intervention therapists diagnosed him with childhood apraxia of speech around his 3rd birthday.

Mandy then enrolled Eldon in the Carle Auditory Oral School (CAOS) in Urbana. The program helps children with and without hearing loss develop spoken language and listening, thinking and learning skills.

At CAOS, Eldon receives extensive speech therapy with speech pathologists well-versed in apraxia, Mandy said.

Since the family lives in Bloomington, Mandy drives an hour each way to take Eldon to school. She says the commute is well worth it.

 a homemade chalk drawing for Better Hearing and Speech Month 2020
Eldon smiles in front of a chalk drawing in honor of Better Hearing and Speech Month 2020.

“It’s amazing. I cannot say enough good things about what this school does for these kids. If they were not there, I know without a doubt Eldon would not be where he is,” she said “Every child with apraxia is different. They might struggle with different sounds or words, so his school is tailored to each child and their needs.”

Speech therapy is vital for youth with childhood apraxia of speech. 

“The biggest thing is being able to diagnosis it properly. Kids can be so different on what they struggle with,” Mandy said. “With Eldon, it’s a double-whammy. He has the apraxia and he has the hearing loss, which makes it difficult to pinpoint sounds.”

Mandy is thankful for the support from the CAOS program, Early Intervention and DSCC to help Eldon receive the right therapy and services for his unique needs.

“Early intervention gave me so much insight and answers to so many questions and helped guide me in the right way,” she said.

Mandy calls her DSCC Care Coordinator, who is a speech-language pathologist,  phenomenal. She attends Eldon’s appointment and takes notes for Mandy. She also helps the family find resources and stay on track with important deadlines.

“It’s definitely been an emotional journey and an exciting and scary journey,” Mandy. “I remember people telling me at the beginning of this to document everything… It’s hard sometimes when there isn’t a lot of progress or times when we’re stagnant. But then I look back and remember where he was and that all of these little accomplishments are huge for him.”

For more information on apraxia, visit www.apraxia-kids.org.

More information on Eldon’s progress and the family’s fundraising efforts for the Carle Auditory Oral School is available on their fundraising page.

Mandy Nicolaides and her son Eldon smile together during their Apraxia Awareness Day celebration.