Meet Eli

This month’s “Good Times Only” design is inspired by Eli, a goofy and affectionate boy from Bloomfield, Indiana who always wears a smile.

Every purchase in March will go to help with therapies for Eli that are not covered by insurance.

We invite you to watch his video, read his story, and subscribe to our podcast to listen to a conversation with him, along with his mom & dad.

Nestled in Bloomfield, Indiana, the Cullison home is nothing short of full: full of love, giggles, and children who enjoy spending their days playing outside with the chickens, jumping on the trampoline and lots of ice cream and movie dates.

Adam and Tya, along with their three kids and three bonus kids, are a living testament to finding joy in the dreariest of times. At the heart of their tale is Elias, or Eli, their second eldest, whose rare medical journey unfolds against the backdrop of 9p24.3 duplication, aspiration/dysphagia, and autism.

This is Eli’s story.

In 2017, Adam and Tya were excited to add another member to their family of three. Tya, confined to bed rest for most of her pregnancy due to a lung blood clot, eagerly awaited the scheduled c-section. In February 2023, Elias came into the world at 7lbs 5oz, healthy and adorable. Yet, as Tya cradled him, she sensed something wrong—a hint of discord in his cries. Medical attention revealed fluid in his lungs, likely a consequence of the c-section.

Recalling those early days, Tya reflects, “With our eldest, we faced similar challenges with aspiration and pneumonia. Thickening his liquids became routine, and all seemed well. Amidst the NICU stay, Elias’s condition didn’t raise alarm bells.” After a week under medical care, Elias was deemed fit for discharge, ready to embark on the journey home.

“After a week of being home, Eli started having purple-blue episodes. I was struggling with some post-partum blues, so I was second-guessing everything. One morning, after pulling an all-nighter, I was sitting in the chair holding Eli. I rested my eyes for a moment, and when I opened them, Eli wasn’t breathing. I ended up doing chest compressions while we waited for the ambulance,” Tya recalls.

Thankfully, Eli made it to the hospital safely. Seeking answers, Adam and Tya requested a swallow study, but it was declined. Instead, Eli was diagnosed with reflux, and after a week-long hospital stay, he was discharged with an apnea monitor. Later that evening, Eli’s monitor was incessantly alarming. Shortly after, he was rushed to Riley Children’s Hospital in Indianapolis for an urgent echocardiogram and swallow study. Failing both tests, he was fitted with a nasal feeding tube. Over the next six months, the medical team closely monitored Eli’s condition, but his struggles persisted, leading to the transition to a g-tube.

By Eli’s first birthday, his journey with food became challenging, leading to the introduction of real foods through his g-tube. By his second year, despite facing hurdles in weight gain and persistent vomiting, Eli’s resilience shone through. Alongside these physical struggles, his family noticed behavioral concerns, yet they remained steadfast in their love and support.

Determined to find solutions, Eli’s family embarked on a quest for answers, seeking guidance from specialists in various fields. Despite the setbacks caused by ongoing aspiration, they approached each challenge with optimism, knowing that a solution lay ahead. It was during this journey that they uncovered a new piece of the puzzle—a laryngeal cleft—a discovery that brought clarity and a path forward.

With unwavering courage, Eli underwent surgery to address his airway issues, a procedure that also saw the placement of a j-tube to support his nutritional needs. Though faced with unexpected complications, including a bout of reactive airway disease, Eli’s spirit remained unbroken. In a moment of trial, he showed remarkable resilience, emerging stronger than ever.

Through it all, Eli’s family remained by his side, their unwavering faith guiding them through the darkest of moments. Though challenges arose, they approached each hurdle with determination, knowing that with love and perseverance, Eli would continue to defy the odds.

In the following years, Eli experienced a remarkable improvement in his health, becoming the healthiest the family had ever seen. At two-and-a-half years old, Eli achieved a significant milestone by taking his first steps.

During these years, Eli also received diagnoses of autism and ADHD, which paved the way for beneficial therapies. Engaging in recreational therapy proved instrumental in helping him learn how to play, while also addressing challenges with social cues.
Reflecting on Eli’s journey, Tya shares, “Eli didn’t utter his first words until he was four-and-a-half years old. Though he would occasionally mumble and mimic others, functionally, he did not speak. Yet, his love for singing has always been there. Anytime he was sick or in the hospital, we would play one of our favorite songs and he would sing along. It was such a powerful thing. It kept the light in his eyes when he was sick.”

In the span of Eli’s life, Tya and Adam have found him unconscious and blue five times. More times than not, Tya has had to do chest compressions. Reflecting on those harrowing moments, Tya shares, “At first, I was completely clueless about what to do, but since then, I’ve become certified in CPR and First Aid. Dealing with those situations takes a tremendous emotional toll, but over time, you learn to compartmentalize and act almost automatically. As I’ve opened up about our experiences, I’ve discovered a newfound resilience to face our challenges head-on. Eli’s remarkable ability to find silver linings in even the darkest circumstances has been an inspiration to us all.”

While Eli is teaching everyone around him the power of positivity in adversity, Tya and Adam have also found a lot of support through their community and faith. As Tya mentioned, “While the level of stress hasn’t changed, our foundation has grown stronger.”

Today Eli is seven years old. He is known to be a very goofy, compassionate, and sweet kid who loves arts and crafts, jumping on the trampoline, and lots of puns. Eli receives all of his food through his g/j-tube but enjoys a sweet treat like ice cream, whipped cream and suckers.

While Eli continues to struggle with pneumonia, the family has shifted their focus on a newly discovered challenge: his heart. As the medical team suspects, Eli struggles with keeping his oxygen levels up, causing an abnormally high heart rate, even when sitting. He is currently wearing a monitor.

Despite the challenging journey, Tya and Adam have found a lot of hope along the way, “I love everything about Eli. I love how his brain works. He is very literal but he also has such an artistic mind. How he figures things out, how he writes and draws; it gives you a picture of what he sees in his brain. It’s a beautiful picture of who he is and how he sees the world. I’m grateful to have been gifted a child that shows the light in the darkness.”

Time to get loud shouters!

Throughout the month of March we will be shouting loud for Eli!

So click here to shop now where every purchase in March will go to help with therapies for Eli that are not covered by insurance.

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Every purchase in March will go to help with therapies for Eli that are not covered by insurance.