Batten Disease Changed Our Halloweens Long Before COVID-19

Trick-or-treating’s early history is shrouded in mystery, though a “Peanuts” comic strip immortalized the tradition in 1951. That means that this year may be the quietest for door-to-door activity in nearly three-quarters of a century, with Halloween falling squarely in the middle of a pandemic.

Only the boldest costumed candy-hunters are expected to ring doorbells on Oct. 31. The bottom line? Halloween is a lot scarier for a lot of people this year. But the holiday has long come with its own set of struggles for families like mine. And while my sister, Taylor, died two long years ago, I can’t help but think about all of the kids whose compromised immune systems have effectively canceled it not just this year, but also for the foreseeable future.

Taylor was born with CLN1 disease (Batten disease). Her vision was one of the first warning signs that something was wrong, and it was the most impactful, noticeable symptom for years after her diagnosis. In some ways, blindness made Halloween — Taylor’s favorite holiday for as long as anyone can remember — almost too difficult to face.

Like that of many other children with Batten disease, Taylor’s vision first started to falter in low light: the poorly illuminated shack filled with the aroma of hot hushpuppies at the North Carolina State Fair; the darkened hallway leading from her bedroom to the Jack and Jill bathroom for a middle-of-the-night visit; and of course, the lamplit, blustery neighborhood streets dotted with child-sized goblins and ghosts on Halloween night.

But ironically, it wasn’t darkness that eventually made the holiday an unbearable harbinger.

The following excerpt from my memoir, “Run to the Light,” remembers the crisp fall Hallow’s Eve holiday in 2009, when my sister was 11:

“Autumn had arrived in Charlotte, and with the change of seasons I could sense a change in Taylor, too.

“On the eve of the first Halloween after the diagnosis, I’d worried if my sister’s poor night vision would prevent her from trick-or-treating. But her vision now was gone, and I didn’t worry about it anymore. Instead, I wondered how much longer she’d be able to walk the streets and ring doorbells before Batten disease stole her legs from her, too. 

“I knew that soon, it would be three years since our first fundraiser. And while science had come a long way since we founded Taylor’s Tale, we were still running from Batten disease.

“We reached my parents’ driveway just as a light rain began to fall. The wind picked up, scattering the leaves that had fallen that day. I shuddered, but I’m not sure if it was from the cold.” 

From the first flicker of initial symptoms, Batten disease is a long, cruel march. We know what’s coming, but we can’t stop it, at least not completely. Not yet.

Early losses are excruciating. And later losses, while perhaps more accepted or understood, are no less painful. As Taylor’s older sister, I didn’t always do a great job of savoring what she (and we) still had. It’s a hard lesson to learn and a hard-earned wisdom that shapes how I live my own life two years after her death.

Whether you love someone fighting Batten disease or have an immunocompromised family member, or if you’re simply doing everything you can to keep your family safe from a virus we still don’t really understand, I hope you find something to smile about on the scariest of holidays. I hope those smiles, in turn, help you ward off the ghosts for one more day.

Happy Halloween!

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Note: Batten Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Batten Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to Batten disease.