Gillette Teen Gears Up for Trip of a Lifetime

By Jennifer Kocher

Special to the Wyoming Truth

GILLETTE, Wyo.–Autumn Tabor sat on the lip of a concrete planter in downtown Gillette Saturday, blinking into the bright morning sun. On the sidewalk in front of her, a handful of women flipped through racks of tie-dye T-shirts that her mother, Londen Tabor, had made.

It was a big day for the 17-year-old: Less than an hour later, 11 people would show up to get $100 butterfly tattoos from Jeff Jones at Pain for Sale Tattooing and Piercings to help fund Tabor’s three-week road trip to the East Coast.

“Are you excited, Autumn?” Tabor asked her daughter, who responded with a hearty nod and big smile.

Tabor smiled back while wiping away tears. The trip is likely the last one of this length that the two will take together as Autumn’s health continues to decline.

At age 11, Autumn was diagnosed with Juvenile Huntington’s Disease (JHD), a derivative of Huntington’s Disease (HD) that impacts children and teens. HD is a genetic, neurodegenerative brain disease with no treatment or cure to slow or reverse its progression. As of today, HD is 100% fatal.

It’s arguably one of the most devastating illnesses, Tabor noted, with symptoms mirroring Amyotrophic lateral sclerosis (ALS), Parkinson’s and Alzheimer’s diseases combined. In adults, the disease slowly deteriorates physical, mental and emotional abilities, along with the ability to walk, talk, think and speak, according to the Huntington’s Disease Society of America (HDSA). In children, the symptoms progress much more quickly.  

For the majority of people diagnosed with HD, symptoms begin to occur in their forties and fifties. For the roughly 10% of those with JHD, symptoms manifest before age 20, according to HDSA. Depending on the age of diagnosis, a person might have 10 to15 years to live.

For teens like Autumn, the disease manifests three to five times faster with a life expectancy of less than 10 years.

Despite its relative rarity, the odds of inheriting the disease are 50/50 from a parent carrying the defective gene.  Autumn inherited it from her dad, Justin Fender, who died at age 36 when she was 11. She tested positive for JHD shortly before he passed away. Without understanding its significance, Autumn had proudly told her father that, she, too, had the disease.

“She wanted to feel close to him,” Tabor said.

Making every day count

Autumn has already packed a lot into her short life. Since receiving her diagnosis, the family has taken several trips, including to Disneyland in California and Moab, Utah.

The upcoming road trip will include at least 15 stops between Wyoming and Tabor’s native New Jersey. Their journey was charted out on a poster-size map of the United States that Tabor set up on a table in front of the tattoo parlor. A string connected to large thumbtacks marked each destination, beginning with a stopover in Estherville, Iowa, to see Autumn’s 20-year-old brother, Logan. Other stops include Missouri, Arkansas, the Carolinas, New Jersey and Pennsylvania – mostly to visit others within the HD community and family members, including Autumn’s oldest brother, 22-year-old Dakota, who will meet them in the Great Smokey Mountains in Tennessee.

Autumn’s personal favorite is Washington D.C. She lit up as her mother talked about visiting the White House. She has been trying to get to the nation’s capital for the past three years, but was unable to do so because of the pandemic.

It’s a bittersweet journey, Tabor admitted, as she explained the swift progression of her daughter’s symptoms. At this point, Autumn needs 24-hour care, so Tabor is her full-time caregiver. Along with the loss of her motor and cognitive skills, Autumn has difficulty walking and will likely need a wheelchair by next year, Tabor said. She also has a hard maintaining eye contact due to her cognitive decline. In recent months, perhaps the hardest for Tabor to stomach, Autumn has adopted a flat affect that has replaced her normally sunny disposition.

“It’s so hard watching her decline,” Tabor said, blinking back tears as she struggled to put on a brave face for her daughter. “I just try to focus on making every day the best day possible for her.”

Minor celebrity

Another coping skill for both mother and daughter is to share Autumn’s story to coalesce the HD community and form connections with other families battling the disease. To this end, Tabor and Autumn launched the “LondenandAutumn” TikTok channel in 2020 to document her story. So far,  the page has nearly 164,000 followers. Autumn’s efforts were recognized in 2020 when she won the HDSA Youth/JHD award for her advocacy work alongside her mother. Before her verbal skills declined, Tabor was featured in an “Ask Autumn” show through Help 4 HD on YouTube, where she answered questions about the disease and shared her own experience.

Tabor also is part of an observational study at the University of Iowa that will potentially help other youth with the disease moving forward, Tabor said.

The goal at this point is to get Autumn, a rising senior, through her final year at Campbell County High School, Tabor noted, where her daughter hopes to once again be a cheerleader.  

For now, the pair are eagerly preparing for their road trip, which begins on Aug. 1. Tabor and her husband, Chris, who adopted Autumn last year, are touched by the dozens of community members who came out to support their daughter. Between butterfly tattoos, T-shirt sales and online donations from their social media followers, they raised almost $6,000 for their trip. It was hard to ask for help, Tabor admitted, but making Autumn’s dreams come true trumped her pride.

“I’m so grateful to everyone who came out to help me give my beautiful daughter this road trip of a lifetime,” she said. “It’s truly heartwarming.”