We’d like to introduce you to Charlie and a story steeped in love and resilience. We should start by sharing that Charlie’s name has deep significance—he’s the namesake of his maternal Grandma, Charlene. A grandma he never had the opportunity to meet. Grandma Charlene passed away unexpectedly after learning about the pregnancy.

There were challenges to Kellie’s pregnancy. Around 30 weeks gestation, she was hospitalized for close monitoring. “No one had definitive answers. Routine ultrasounds showed that Charlie would likely be very premature, and he couldn’t move his legs in the womb.”

By and large, Kellie’s two-month hospital stay was filled with lots of worry and loneliness. Then, on August 6, 2021, Charlie made his entrance into the world. His parents were prepared for some complications, but not to the extent that they would face. Charlie had a significant brain malformation that wasn’t detected in any of his ultrasounds. He was hooked up to a heart monitor, suctioned to keep from choking, and required a CPAP to open his airways. His parents couldn’t see his face for the first six weeks! Charlie was deemed a “medical mystery.” 

Kellie and Andrew were told that Charlie may not survive infancy. In an instant, the weight of those words split their world in two. It’s one of those statements that hangs in the air, too heavy to touch. There were layers of grief. Kellie said, “Honestly, I’ve tried to block some of this out. I was still working through the absence of my mom and the grief I felt about becoming a mother while losing my own. I didn’t have time to process that, and then there was this added grief to work through.

“Before Charlie was born, we anticipated possibly having a little boy who would be using a wheelchair. In my heart, I knew we would have a longer NICU stay after his birth. We didn’t, however, anticipate another three months in the hospital or the level of complications we faced.”

Eventually, the day came for Charlie to be discharged. With so much to monitor, the hospital had become a blanket of security. Kellie said, “I remember not wanting to leave the hospital and be the one in charge of his life. He would be coming home with so many monitors and things to manage. During the first year of Charlie’s life, we were never more than five feet away from him. Because of his swallowing challenges, he sounded like he was underwater all the time. It was traumatizing.”

Being a great team and making room for laughter carries Kellie and Andrew through. Kellie said, “I am the coordinator of all things Charlie, which can get heavy. I almost changed my voicemail to ‘Charlie’s secretary, how can I help you?’  because almost every phone call is about Charlie and his needs. My husband is a super dedicated dad who brings so much joy and lightness into things, which is very helpful and a good balance.”

Certain diagnoses have been defined during the course of his first four years: cerebral palsy, severe brain malformation, neuromuscular disorder, dysphagia, and drug-resistant epilepsy.  But Kellie and Andrew are making peace with Charlie’s lack of a specific, overarching diagnosis. 

While he remains a “medical mystery,” Charlie has some characteristics that suggest he has a type of syndrome or disorder. At two weeks old, while in the NICU, the genetic specialist suggested he undergo whole-genome sequencing—the most advanced genetic testing available. It came back non-diagnostic, meaning it didn’t find anything unusual.

“At the time, we didn’t know whether to feel relieved or disappointed. And most days in the years after that, we oscillated between the two feelings. On one hand, having a diagnosis could help us understand what his future might hold. It could also help us connect with other families for support. But lately, we’re at peace with not being diagnosed.

“It’s a double-edged sword. It would be nice to have a community with a diagnosis and support for that, but on the other hand, it’s extraordinary that he’s just Charlie. It’s beautiful in his own way that he gets to show us what his limits are for potential. We don’t need another diagnosis—he’s just Charlie.

“Charlie gets to write his own story.”

A lot of exciting things have happened with Charlie since those early days in the NICU, followed by constant care at home. He’s a hard-working, curious, and determined boy who loves books, nature, monster trucks, trains, flags, and spending time with his two younger twin brothers, Cash and Luca. His brothers are his biggest cheerleaders! With a chuckle, Mom says, “Charlie is a busybody who needs to know what’s going on around him.” He’s growing up, and he’s gaining confidence and independence.

Therapy has been instrumental to Charlie’s growth. Through scholarships sponsored by the C. Norman Fry Fund in 2025, he’s participating in ABM (Anat Baniel Method) and equine-assisted therapy.  

Not long ago, Kellie and Andrew were constantly by Charlie’s side. Now their days are filled with books and trips to the library, closely observing nature, and lots of playtime with all three boys. The whole house is lighter. Charlie is a child who’s found his way against the odds—bright, curious, sometimes sassy, and completely himself.

And he’s racking up the wins! Here are just some of the accomplishments we celebrated when we spoke with Kellie:

• He can maneuver from lying down to sitting up, and he’s really good at rolling his way around the house—new ways for a curious boy to explore his environment.
• He can sit independently and even tolerate some bumps from his little brothers without falling—this takes core strength.
• At equine-assisted therapy, he’s able to sit up straight while wearing a harness and trot with the horse—this is no easy feat.
• He learned how to crawl out of his floor bed and over the mattress bumper—this takes determination.
• He can drive a power wheelchair amazingly well. In the spirit of creativity, Charlie figured out how to use his wheelchair to push his brother Cash in his little red car. (Be sure to check out this video!)
• He graduated from an eye-gaze AAC (augmentative and alternative communication) device to a touch-based AAC device with a keyguard. He can drop a finger on a defined spot—requiring precision and control—and has really figured out his keyguard. This is a big deal as it’s paving the way for communication.
• He attends ECSC (Early Childhood Special Education) school three times a week with a one-to-one teaching assistant.
•  He knows his shapes, colors, animals, animal sounds, anything vehicle or train-related, some letters, is learning to count, and the list goes on! He has a really impressive receptive language vocabulary.
• He is really good at his search-and-find books, further demonstrating Charlie’s strong receptive language skills.
• He has motions for expressing yes and no, which is a big deal! Before, he would only clap to say yes. Now, learning from his brothers, he shakes his head no. 
• He initiated waving to another boy at the library. Charlie loves watching kids play, but he’s often hesitant to interact with them. Mom said, “He recently saw a little boy at the library and was watching him closely. I told him, ’You can say hi,’ and he took his hand and made a little wave. He was thrilled when the boy waved back.” Charlie is gaining confidence.

“Charlie is writing his own story!” 

They recently had an exciting visit with Charlie’s orthopedic surgeon and received some very positive news. His specialist doesn’t see a need for hip or spine surgery; furthermore, if Charlie continues on this path, the surgeon believes it’s unlikely in his future. This is an expected surgery for children with conditions similar to Charlie’s—he continues to defy the odds on multiple levels. 

At this same visit, his doctor recommended equine-assisted therapy for Charlie. Mom shared that he’s already been participating for two years. His surgeon attributed his positive exam to the outcome of his therapy.

In general, Charlie’s health has been good. He hasn’t been hospitalized for any respiratory problems or other significant illness since his first year. All of his organ systems are good. The biggest challenge they are currently facing is epilepsy. 

Charlie’s seizures started when he was around two and a half. Mom said, “He’s tried and failed so many medications that they’re now discussing performing a laser ablation in his brain. His seizures used to be in clusters, one or two days per year, but now they’re increasing. We can help him do other things safely; there’s nothing we can do to help him with a seizure. It’s very scary.”

We talked with Kellie about how therapy, adaptations, equipment, and medical visits are costly, especially when you have to abruptly adjust to a single income. Kellie said, “I had to give up my career to care for Charlie. He was so medically fragile that he needed around-the-clock skilled care.” The cost of living is hard for families today. Yet it’s so apparent that Andrew and Kellie want to give Charlie the best available opportunities.  

Kellie shared their commitment, “Well, it certainly takes a financial sacrifice. But it also takes an emotional toll with all the time and effort in planning, researching, and finding resources. I make so many phone calls on Charlie’s behalf. It’s exhausting, but it’s worth it. We’re determined to give Charlie every opportunity and expose him to different therapies to maximize his potential and quality of life. We want him to have the most dynamic life possible.” 

Kellie also talked about the many ways Family Hope Foundation has helped make this process less stressful and more accessible for their family. “Family Hope Foundation has been a wonderful financial resource that has helped us explore alternative therapies for Charlie. You also make the process easy by giving the scholarship dollars directly to the provider to manage.

 “I feel like we need to coordinate so many things regarding appointments, insurance, and medical supplies, so we truly appreciate how easy you make the process for us. It sounds like simple things, but all those little details add up and can quickly become overwhelming!

“Your scholarships also come with no strings attached. The focus remains on the success of the child and family, which we love. Because of Family Hope Foundation, we’re able to get help and protect our privacy on our own terms. 

 “Starting with the loss of my mom, our family has experienced five years of significant grief mixed with abundant joy. There are so many things about Charlie and his story that should be told—we’re now at a comfortable place where we want to share his story.”  

We also asked Kellie and Andrew to ponder the future and share what dreams they have for Charlie. “We wish for him to be able to communicate equivalent to the depth of his thoughts. We want him to achieve his full potential—whatever that means for Charlie. We want him to continue to find joy and bring joy to others. And we want him to feel peace and comfort. 

“We want Charlie to feel included and know he belongs wherever he is, because he does, because we all do.”   

Charlie is writing his own story, and in the process, he’s showing the world what it looks like to be loved and to be resilient.

 “Most things we take for granted are extremely difficult for Charlie. In many ways, he’s trapped in a body that doesn’t respond the way he wants it to. Yet he’s patient, easily consolable when upset, and, when encouraged, doesn’t give up trying to do things on his own. Having a child who needs a lot of help makes you appreciate your own body.

“We know what an emergency looks like, and we know when we can just slow down and take our time in life. We learned this from Charlie. Just as his milestones do, life’s little gifts hold just as much significance.

 “We’ve done a lot of healing over the last five years. My commitment to Charlie’s care reflects my mom, who passed away when I was only 31, not giving me the privilege of caring for her later in life. She worked with individuals who had disabilities, so it’s a gift to care for Charlie in her honor.”

We tend to close our interviews with a few “big” questions. Families’ answers are always unique and tend to echo the tone of our conversation. So, we asked Kellie and Andrew what hope means to their family. “Hope is what keeps us smiling. It means tomorrow is another day to try again. It means celebrating the small wins. It means the future still holds good things for us.”