Dream Night at Emmys for a Special Fan of TV

As television celebrities sashay into the Shrine Auditorium for tonight’s Emmy Awards ceremony, 16-year-old Jillian Totten will be living a dream come true. She will be sashaying with them.

Adorned in a sleek, open-backed designer dress, Jillian will take her $200 seat for the ceremony in Los Angeles and then mingle with the stars at the post-awards party.

For at least this weekend, the television fan from Atlanta can forget the hospital and clinics where an arsenal of medical instruments help her struggle for breath.

Jillian has cystic fibrosis, a genetic disorder that leaves patients fighting for air and battling serious infections. The illness has no cure and its symptoms are debilitating.

While hospitalized for most of last year, Jillian applied to the Starlight Children’s Foundation--a nonprofit group that grants wishes to children with serious illnesses--asking to attend an awards ceremony.

About a month ago, the group informed her that she, her mom and her mom’s partner would be heading to the Emmys.

Since then, Jillian has tasted a little of the fame that TV stars experience. Friends closely monitored articles about her trip in the local newspaper. Strangers approached her in the hospital about the ceremony. On Friday, TV cameras saw her off at the Atlanta airport.

“It’s a lot of fun,” Jillian said Saturday morning, lounging on her hotel room bed next to her mother. “I feel special.”

The pampering began last month with a trip to the famous designer Nicole Miller’s Atlanta boutique. Greeted by Miller, Jillian had the pick of the shop. After sampling from the designer’s exclusive hand-beaded collection, where some dresses fetch $1,500, Jillian fell in love with a body-hugging blue rose-patterned frock. Miller donated the $600 dress.

“It’s really comfortable, not scratchy at all,” Jillian said. “Blue is my favorite color.”

On Thursday, Jillian had her nails done, a treat for most 16-year-old girls but potentially dangerous for someone with cystic fibrosis. As a beautician glued on acrylic nail extensions, Jillian wore a mask to protect her lungs from the fumes.

“I wouldn’t let her do it before,” said her mother, Claudia Schauffler, who is a respiratory therapist.

But Jillian’s star treatment will reach a climax today when, after breakfast in Santa Monica, she will head for Jose Eber’s Beverly Hills salon. There, Maurice will ensure that her hairstyle is de rigueur, while Arnell will add the finishing touches to her makeup.

She and her mom will then head for the Shrine. The only sign of Jillian’s illness will be the oxygen inhaler she brings along in case her air passages begin to clog.

Roughly one in every 2,000 children in the United States is born with cystic fibrosis. Although many die in childhood, recent medical breakthroughs have allowed more sufferers to reach early adulthood and live fairly normal lives.

Jillian wanted to be a dancer until her condition deteriorated two years ago and forced her to quit practicing. But she has recently found running and playing basketball a little easier, and still harbors ambitions to study physical therapy in college.

Aiming for that goal--and maintaining her bedroom shrine to “ER” star George Clooney--have eased the burden of regular hospital visits, her mother said.

“Jillian has a gift of being able to put things behind her and move on,” Schauffler said. “That year in the hospital would have devastated anyone else.”

The wish-granting also helps. The Los Angeles-based Starlight organization enables about 1,500 children every year to live out their dreams.

“These kids face a regimen of hospitalization that they can’t escape from,” said Karri Holley, a Starlight marketing and communications coordinator. “But this is something that [Jillian] will remember.”