Eleanor Loves Happy Wheels!

Happy Wheels has been part of Elee’s journey longer than we even realized.

When she was just 6 months old, she was hospitalized at Prisma in Columbia with salmonella. During that stay, Happy Wheels came by with their toy cart, and I still remember the smile it brought to her face. In an unfamiliar and overwhelming environment, that simple moment of getting to choose a toy she could keep made a lasting impact. At this age, it helped me more than it helped her. 

Just a few months later, everything changed. At 9 months old, after I found her unresponsive in her car seat, Eleanor was diagnosed with refractory epilepsy. She then spent 39 days inpatient between Children’s Healthcare of Atlanta (CHOA) and Medical University of South Carolina (MUSC).

Since then, Elee’s days have been shaped by her medical needs. Despite multiple seizure medications, a strict ketogenic diet, and constant monitoring, she continues to have frequent seizures, many in her sleep, and now increasingly while awake. Over time, she was  diagnosed with Ring 14 Syndrome, an extremely rare, lifelong chromosomal disorder. Because it’s so rare, much of her long-term outlook is unknown.

Day to day, Elee faces challenges including refractory epilepsy, hypotonia, developmental delays (especially speech with a diagnosis of apraxia), sleep apnea, tracheobronchomalacia, and being immunocompromised. The hypotonia also affects her breathing and overall strength, which requires close attention.

Over the past four years, Elee has spent months in the hospital between MUSC and Prisma Children’s Hospital, often arriving by ambulance and staying for days at a time. During those stays, Happy Wheels has continued to show up for her.

What may seem like a small gesture, a cart of toys, has the power to shift the entire tone of a hospital stay. It gives kids something to look forward to, something that is theirs, and a sense of normalcy in the middle of so much uncertainty.

Along the way, we’ve also formed a special relationship with one of their volunteers, Heidi Dalton. When we were living in Charleston for a therapy intensive, she made sure we had everything we needed and treated us like family. That kind of care extends far beyond the hospital room.

What makes Happy Wheels so meaningful is that it meets every child exactly where they are, whether they’re there for a single day or, like Elee, returning again and again. Every child gets that same moment of joy.

While the medical community does not expect Elee to outgrow her seizures, we hold on to the milestones we do reach. In 2025, we celebrated 241 days of seizure freedom, something we will always be grateful for. On June 19, 2025, Elee went into status epilepticus, and since then, she has not gone more than a few days without seizures. Currently, she is having daily seizures that continue to evolve.

Even so, we continue moving forward with hope. Elee is scheduled for neurosurgery to have a VNS device placed on April 15th, and on May 26th, 2026, we will be welcoming her seizure alert service dog, Biscuit, a golden retriever who will become an important part of her care and comfort.

Happy Wheels has been there in some of our hardest moments, bringing light in simple but meaningful ways. We are so grateful to be part of their story, just as they’ve become part of ours.