Stecker Family

09.12.2024

Wheeler is five years old. When he was less than a month old, his parents were told he would lose his vision, memory, mobility and life. Wheeler has CLN3 juvenile Batten disease, a condition that, on top of losing nearly all of his abilities, causes him mental destruction and behavioral storms, and eventually will rob him of his life, likely in his teens.

Getting through an average day is exasperating for everyone in the family. Wheeler is both sensory sensitive and sensory seeking, making even the smallest of tasks - like a few bites of dinner- challenging. His mom Judy plays ‘knights and dragons’, making growling sounds as she hangs her 50lb son upside down, struggling to hold up his weight, to meet his sensory needs in the hope he will sit down and eat his dinner. Meanwhile, Wheeler's dad Court plays with his younger son Read, who is not affected by Batten, but like any child, has his own wants and needs - needs that are hard to meet in a home that revolves around Wheeler.  Even their two dogs chip in to support, often approaching Read with a ball to play with or lying on Wheeler to provide sensory input. Court and Judy divide and conquer, fighting their exhaustion from a long day, in hopes of being the best parents they can be amidst the overwhelming situation they were dealt. Only to know they will do it all over again later that day, and then again the next.

09.13.2024

Every Monday evening after a long day at work, Wheeler's dad Court drives him an hour each way to riding therapy. It's just one of the many therapies Wheeler takes part in every week, but it's the most unique. He's lifted up onto Dixie the horse, whose gait sends Wheeler the sensory signals he needs to sit still and focus on his speech exercises. As the horse walks around the ring, Wheeler's stillness can turn to screams from one second to the next with no explanation and the only remedy is his father swiftly pulling him down into his arms, finding a quiet spot alone to calm him. 

There's no dropping Wheeler off and sitting back to relax. Court keeps a close eye on his son from the moment they arrive until the moment they head home, ready to rush over and intervene before the next outburst occurs. 

This is how Batten disease affects a family.

09.17.2024

Wheeler screams out of frustration, his mother's face just inches away. She stays calm and looks into his eyes in hopes that maybe for a brief moment they will connect. Wheeler's parents have gotten used to the occasional outbursts, but what had been sporadic has become common and taken over their lives. Behavior is Wheeler's form of communication, but they struggle to figure out what their son is trying to tell them. 

Today, it started with the hat he took from a friend and his mom's calm explanation of why he needed to give it back. But she knows the scream runs deeper. She knows her son's brain is malfunctioning from Batten disease, dying one neuron at a time.

Despite her exhaustion and ringing ears, she takes it because one day soon, Wheeler won’t be able to do anything at all.

09.20.2024

Wheeler was diagnosed with an ultra rare fatal condition just after birth, and miraculously there were 3 treatments in the pipeline for his condition. Neither of these things happen often. On top of that, his mom was Deputy Chief of Staff of the US Department of Health and Human Services. When she reached out to me at that time, I remember thinking, if any child has a chance at beating the odds, it's this little boy.

But five years later, all 3 treatments have been stalled, shelved or abandoned, leaving Wheeler and kids like him in limbo between bureaucracy and the promise of scientific innovation. And now his symptoms are taking over.

Wheeler’s parents have found themselves fighting a system of access to therapeutics not designed for their son, while at the same time fighting a world not fit for him.  

Screaming fits, negotiations, calming, anger, frustration, exhaustion. This is Wheeler’s world, his family’s world, but there are millions of others like them who live in it.