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  • Autumn Cruz / acruz@sacbee.com

    At home with her dog, Francie Dillon tells of her experiences as a one of Northern California's premier children's entertainers. After 18 months of medical tests, doctors still can't identify the disease that threatens her future.

  • Autumn Cruz / acruz@sacbee.com

    “I am watching my career disappear under my feet. … I don’t have fear that I would end up on the streets, but I don’t want to be a burden to my daughters, Francie Dillon says.

  • Autumn Cruz / acruz@sacbee.com

    Francie Dillon,takes a break from swimming at Alhambra Athletic Club. Increasingly debilitated by a mysterious disease, she is no longer able to play strenuous sports like racquetball.

  • Autumn Cruz / acruz@sacbee.com

    Francie Dillon looks at a wall in her Curtis Park home that is filled with memories jotted down by family and friends. She says that as a child she always wanted to write on the wall. So, in her adult life, she picked one for that purpose.

  • Autumn Cruz / acruz@sacbee.com

    Francie Dillon says her cat, Dougie, brings her comfort, never leaving her side.

Top local children's entertainer struggles with mysterious disease

Published: Tuesday, Sep. 25, 2012 - 12:00 am | Page 1A
Last Modified: Tuesday, Sep. 25, 2012 - 7:52 am

The world began closing in on Francie Dillon in small increments.

As she performed her bouncy version of "Down by the Bay" early last year, leading hundreds of children in a raucous singalong, her tongue felt too thick.

"I need to work on my diction," Dillon told herself after her performance at a Sacramento elementary school. "I'm spitting. I'm slurring."

Weeks later, at a show in front of another school assembly, Dillon took brief respite on a stool when her legs felt too weak to carry her through her darting musical routine.

That summer, at the start of a performance in Vacaville, it was as if her hands had suddenly become foreign objects. She glanced down to make sure she was still holding her guitar pick.

That is when she felt her first shiver of fear.

Today, her symptoms mark her as disabled, interfering with her speech, movement and ability to deliver the high-energy shows that for more than two decades have made her one of the premier children's entertainers in the Sacramento area.

After 18 months of doctor consultations and CT scans and MRIs and blood tests, she still can't put a name to the condition that has placed her future in shadow. Scary possibilities abound: ALS, also known as Lou Gehrig's disease. Parkinson's disease. Multiple sclerosis. But her symptoms do not fit neatly into a medical box, so the diagnostics continue.

Dillon once earned $55,000 to $80,000 a year as a children's entertainer. Today, her speech and mobility constricted, her only guaranteed income is from California State University, Sacramento, where she teaches a weekly class in children's literature. It is not enough to cover the mortgage on the Curtis Park home where she and her former husband raised their two children, Erin and Lindsey.

So, as she sends her youngest daughter off to college, Dillon is bankrupt and her home of 21 years is in foreclosure. She is preparing to move into a small studio apartment with her dog Taylor and tabby Dougie, toward a life filled with uncertainty.

"God almighty, I need something familiar in my life, and this guy never leaves my side," Dillon, 56, said with a laugh last week as she patted Taylor in a disheveled living room filled with packing boxes.

At the heart of Dillon's uncertainty is her medical status. Over the past year and a half, she has seen a neurologist, a generalist, an acupuncturist, an ophthalmologist and even a psychologist, none of whom has been able to fully explain why her body is betraying her.

The future is frustratingly murky.

"I can't dwell on what tomorrow might look like, or next week, or next month," said Dillon, who speaks haltingly at times, the left side of her mouth drooping slightly. "Right now I am focusing on living in the moment."

Looking for a road map

It is a common creed among patients with illnesses for which a correct diagnosis can be made only after a lengthy process of elimination.

No definitive test is available for ALS, for example, a potentially fatal neurological illness that causes progressive muscle deterioration and weakness throughout the body.

The same is true for Parkinson's disease and a condition known as conversion disorder, in which psychological stress creates physical symptoms including paralysis and speech difficulties.

Dillon has some symptoms associated with those disorders, such as muscle spasticity and speech problems. But, at least so far, she has escaped other symptoms, such as difficulty swallowing. Some of her problems wax and wane. Her eyes do not always track correctly. Collectively, her symptoms do not make perfect medical sense.

"Many of our neurologic conditions are clinical diagnoses," said Dr. Edward Kasarskis, chief of neurology at the University of Kentucky in Lexington and a consultant to the national ALS Association. "Despite a lot of research, we can't always provide concrete evidence that you have disease X or Y or Z."

"It's a major source of surprise and frustration for patients," said Kasarskis, who is not involved in Dillon's case, "because it seems to most people that we have a simple blood test for every disease. We don't."

The waiting can be torture, the doctor acknowledged: "People want to know what they have, what the future holds. They tend to imagine the worst, and they want a road map as to how to manage the problem."

Even Dillon, who is incorrigibly perky by nature, has allowed her mind to travel to the darkest of places.

"My biggest fear is continued degeneration of my body, and my inability to support myself," she said, wiggling her right foot as she spoke. "I sometimes feel like the senior citizen who doesn't want to buy green bananas because they're not sure they are going to be around to eat them.

"I am watching my career disappear under my feet. My children's nest is being taken away. I don't have fear that I would end up on the streets, but I don't want to be a burden to my daughters."

'Voice of Fairytale Town'

Petite and friendly, with a sweet, slightly raspy voice and spiky dark hair tipped with blonde, Dillon has trouble rising from soft chairs and typically walks with a wide, stiff gait, "like the Tin Man," she said. Her speech can be rapid-fire one minute, slow and drawn out the next.

"There is no juice to sustain me," she said of her diminishing energy level. "I just wish I knew what was going on."

Without a clear diagnosis, Dillon cannot apply for Social Security disability benefits. She can't look for support groups to help guide her through the coming months and years.

"I have always been a planner, and if I had a diagnosis, at least I would be able to plan," she said.

Dillon's life plan never really included a career as an entertainer, she mused. "That just kind of just happened."

In the early 1990s, after a stint in advertising and the birth of her first child, she started looking around for work that would allow her more time with family.

Blending her informal background in guitar and trumpet with an education degree and a big personality, she launched a program for preschoolers at the Sierra 2 community center. Word spread of her talent for stoking young imaginations through songs such as "Itsy Bitsy Spider" and stories like "The Three Little Pigs," and soon her phone was ringing.

"I had found a new, completely encapsulated version of myself, and I loved it," she said.

Dillon became a fixture at Fairytale Town, the iconic Land Park playland for children, using facial expressions, sound effects and character voices to entertain small groups of kids for "storytime" and larger crowds during gatherings such as the annual children's book festival.

It is Dillon's voice that warbles through the park's "storybook boxes," which broadcast fairytales and songs.

The "Old Woman in the Shoe" box is right outside my office, so I get to hear Francie everyday," said the park's executive director, Kathy Fleming. "She truly is the voice of Fairytale Town."

Fairytale Town was Dillon's ticket to other performance venues, including concert halls, dinner theaters, hospitals, libraries and bookstores.

She produced an independent album, "The Toy Box," with her musician brother, Christopher Hedge. One of her videos earned her a regional Emmy Award nomination, and she was a recipient of the National Parents' Choice Award. Dillon is one of three candidates for the 2012 local Art Educator of the Year, which will be awarded later this month.

"Francie makes literature come alive for kids, and they respond to that," said Fleming. "She has been educating kids in so many ways and for so long, I imagine she has touched the lives of hundreds of thousands of them."

'I loved every minute'

Dillon has come to terms with the idea that "I can't bound up onto a stage anymore," or zigzag her way through an audience. But she is not quite ready to slam the door on her entertainment career.

"I have come to realize that it is not all about this," she said, gesturing to her lower body. "I'm not sure the kids care so much about it."

She has signed on for a couple of small events at Fairytale Town in the coming year. She will bring her stool, she said, and perform with every ounce of energy she has left.

It is one of the many ways that Dillon has been forced to downsize her life.

A couple of weeks ago, she held a yard sale, parting with furniture, appliances and other items too large for her new studio apartment. She traded her huge bed, which she bought as a gift to herself after her divorce in 2000, for a double mattress. She sold her piano. She found new homes for two of her four pets.

For years, Dillon was the unofficial social director for a group of friends who played wallyball and racquetball at a local gym. Unable to participate, she now swims laps by herself.

In the future, her performance venues will be more intimate, her acts less dynamic, but her commitment to children will continue until her body gives out.

"I want them to know that I didn't choose to stop performing," she said. "I loved every minute of it. It was glorious."

Earlier this month in San Jose, Dillon teamed with Art Grueneberger, a Sacramento puppeteer with whom she has performed through the years, in what might have been her final performance on a big stage.

Singing the finale, "What a Wonderful World," with Grueneberger and his puppet, she scanned the audience and locked eyes with a girl of perhaps 9 who was singing along, rapt. Emotion overwhelmed Dillon.

She handed the microphone to Grueneberger for the big finish.

Then, with tears in her eyes, she waved goodbye.

© Copyright The Sacramento Bee. All rights reserved.

Read more articles by Cynthia Hubert



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