Teen embraces life in wake of fatal diagnosis
The family Christmas is moving to Autumn’s Butterfly House this year, Londen Tabor said, opening the door of the tiny home in the family’s backyard in southern Campbell County.
Walking past her mom, 13-year-old Autumn Fuernisen twirled in the middle of the living room before plopping onto a purple couch lining the back wall next to a ceiling-high Christmas tree adorned in purple garland and twinkly lights. To her right, a log glowed orange in the brick, cardboard fireplace that Londen crafted to hide the space heater.
The miniature house was decked out for the holidays just like Autumn in her red and white Santa dress with black tights that matched the frames of her new glasses and hair in two jaunty buns on the top of her head.
The house – complete with a tiny deck and porch swing – was built this summer for Autumn by volunteers from TRI Mountain Homes and Make-a-Wish Wyoming, which grants wishes for children with terminal illnesses or other diseases.
Although initially intended as a playhouse, the Butterfly House – also known as the Butterfly Motel when she and her cousins sleep out there – looked a lot like a regular home with chairs in the corner and a coffee table pulled in front of the couch on top of a butterfly rug. Iridescent purple and blue butterfly decals decorated the walls and shelves along with pictures of Autumn and her family from their various travels.
Earlier this summer real butterflies had actually lived there, too, after metamorphasizing from caterpillars to chrysalis before ultimately being unleashed in the back yard.
She’s always been drawn to butterflies, Autumn said, blinking hazily into the morning sun.
“They’re so beautiful,” she said, “and peaceful.”
Her tiny dream home is a bittersweet reminder of the fatal verdict facing the teen, who three years ago was diagnosed with Juvenile Huntington’s Disease (JHD) at age 11. Huntington’s Disease (HD) is a genetic, neurodegenerative brain disease.
There is no cure or treatment to halt, slow or reverse the progression of the disease. As of now, it’s 100% fatal.
It’s arguably one of the most devastating illnesses, Londen noted, with symptoms mirroring ALS, Parkinson’s and Alzheimer’s combined.
The disease slowly deteriorates a person’s physical, mental, and emotional abilities, and one’s ability to walk, talk, think and speak, according to the Huntington’s Disease Society of America (HDSA), with patients eventually requiring round-the-clock care until they typically succumb to pneumonia, heart failure or other complications.
Ninety percent of those diagnosed with HD are 30 or older, with only 8% between 13 and 20 years old. Rarer yet, just around 2%, are kids like Autumn who are 13 and younger. Depending on the age of diagnosis, a person might have anywhere from 10-15 years to live.
With an HD diagnosis, the older, the better. For young teens like Autumn, the disease manifests three to five times faster with a life expectancy of less than 10 years.
Relatively speaking, the disease is rare with only around 41,000 symptomatic cases in the U.S., per HDSA. Unfortunately, for Autumn, however, the odds of inheriting it are 50/50 from a parent carrying the defective gene like her dad Justin Fender.
Autumn tested positive for JHD just before Justin died at age 36, roughly a decade after his diagnosis. Videos that Londen made at the time show Autumn spooning ice cream into her dad’s mouth as he struggled to hold up his head from the hospital bed. In another, she helps him play a video game in bed, resting a steady hand on his shoulder as he jerks back and forth.
When she tested positive, Autumn had been eager to tell her father that she, too, had the disease.
“She wanted to feel connected to him,” Londen said, shaking her head. It had been a hard decision, she said, letting her daughter tell her dad knowing how he would feel. It was just one more hard thing in an otherwise grueling situation.
Though Justin and Londen had never married and had broken up shortly before he learned he had the disease, Londen, Autumn and her old brother Logan were literally by his side until the very end.
Autumn remembered waiting for him to wake up the morning he died.
“It just looked like he was sleeping,” she said thoughtfully with a shrug.
Now, Londen is gearing up to face the inevitable yet again, this time with her only daughter.
“It’s hard to even get your head wrapped around it,” she said with a sad smile. “But we’ve decided to make the best of it and enjoy every moment, huh, Stinker?”
Since receiving her diagnosis, the family has already taken several trips, including California and Moab, Utah, and a trip to Disneyland. The pandemic temporarily put a halt on the family’s summer travel plans, including missing the annual HDSA conference in which Autumn won the Youth/JHD award for her advocacy work along with her mother. Already a voice on the subject, Autumn also just hosted her first “Ask Autumn” show through Help 4 HD on YouTube, answering questions and sharing her own experience with the disease.
Thus far, the onset of her daughter’s symptoms has been fast and furious, Londen said, as Autumn continues to lose dexterity and strength that makes everyday chores like buttoning her clothing, going to the bathroom and brushing her teeth incredibly challenging for her. Now, her mom helps her get ready for school in the morning as her speech continues to slur and her balance likewise deteriorates. Swallowing, too, is becoming increasingly more difficult, so they watch her carefully as she chews.
For her part, Autumn bravely faces every day. As a ninth grader, she’s living out her high school dream of being a cheerleader, which has admittedly been the best part of her entering high school. She just finished the fall season cheering for the Campbell County High School football team and will return to the sidelines this winter for basketball when school resumes.
Likewise, Autumn’s teachers and the staff at CCHS have gone out of their way to make high school as normal as possible for the teen. This means sending out a special bus to pick her up before the start of second hour as the illness makes it increasingly harder for Autumn to get up in the morning. The bus on which she’s the sole passenger also makes an early trip home to accommodate her disabilities.
For Autumn, that’s the coolest thing in the world.
“One morning, the driver even brought me a coffee,” she said with a big smile, moving on to talk about her recent award and her impending trip to go see President Elect Biden’s scheduled inauguration in January, complete with tickets for the parade and inaugural ball that they’ll be attending along with Senator John Barrasso.
As for Christmas, Autumn hasn’t really given any thought as to what presents she wants besides a sim card for her broken cell phone. Maybe some sensory tools for home. She shrugged. Ordinary teen concerns like Christmas presents have no bearing on the girl who has vowed to live life to the fullest and enjoy every moment.
That’s all she has, she knows, as her mother puts on a brave face to once again fight the battle till the bitter end.
The only thing that really gets to Londen is that clinical trials have just begun for HD treatments, though her daughter is not eligible as a teen due to concerns by the drug companies about long-term brain damage, which as far as she’s concerned, is a preposterous pretense in the face of death.
Londen hasn’t given up yet, however, as she continues to learn and talk to everyone she can about both the disease and any options for saving her daughter or postponing the inevitable.
In the meantime, there’s Christmas to celebrate, and once again, Autumn has plans to make pies for her family as she did this past Thanksgiving. Her favorites are pecan and apple, and she makes a pretty mean pie if she doesn’t mind saying so herself.
For a family who has suffered so much, it’s the little victories along the way that get their focus as they prepare for their first Christmas at Autumn’s.