NEWS

10-year-old proves illness doesn't have to hold you back

Kelli O'Brien

In her black leotard and white tights, her tiny frame gracefully bending in time with the music, one would never guess Tayla Kelley has a life-threatening disease.

Executing arabesques and chasses, leaping from one side of the studio to the other, the Canandaigua, N.Y., resident looks to be completely in her element, nonchalantly getting in line behind the other dancers to do it all over again.

The 10-year-old girl was born with a disease that leaves her with an incomplete immune system. Since her body is unable to fight off bacteria and to make antibodies in response to vaccinations, she requires daily antibiotics and a weekly blood transfusion. Tayla has three sisters, one of whom also has the disease.

Tayla and her mother, Jill, sat together at the Studio for the Performing Arts in the P&C plaza in Newark to talk about the Burst the Bubble dance benefit they helped organize to raise awareness of primary immune deficiency diseases.

The benefit, to be held Saturday, June 7, at the Smith Opera House in Geneva, will feature Sabra Johnson, the season-three winner of the Fox reality show “So You Think You Can Dance,” as well as members of various big-city dance troupes and local dancers.

“We started talking about it last year after my husband and I went to an immune-deficiency conference in St. Louis,” Jill Kelley said. “Tayla and I started by selling rubber bracelets at different fundraisers, and then, one day, my daughter said we should do something with dancing, and I was like, ‘Now that could work.’”

Tayla has risen to the challenge her condition gives her — she chose to look past being a “sick kid,” instead wishing to be thought of as a serious dancer. Her schedule includes dance lessons in ballet and jazz nearly every day, Mondays and Tuesdays in Auburn, as well as Wednesdays and Thursdays at the studio in Newark. She does recitals on the weekends.

Beginning at the age of 3, Tayla has tended to dance beyond her age group. Recently, she auditioned for the Draper Center in Rochester, and her performance jumped her from the junior division to the four-week-long senior dance session this July.

“She’s very advanced due to the ambition she has, and her desire and love for dancing,” Heather Colletti, co-owner and instructor at the studio in Newark, said. “If she gets tired, she gets right back up — I think that’s why she is where she is now.” Colletti teaches Tayla in a Ballet 3 class, which consists mainly of high school-age girls.

While many immune deficiency patients are kept out of public schools, Tayla’s parents decided that they wanted her to lead a relatively normal life, and that included her education. They worked with the Canandaigua school district on a plan that includes separate drinking fountains, bathroom facilities, her own art utensils as well as her own keyboard.

Jill Kelley said that Tayla has had several surgeries and has been hospitalized with the flu, which kept her in isolation fighting off a secondary bacterial infection for four days; all in all, she said Tayla has been under anesthesia more than 27 times in her lifetime, and has had a temporary g-tube put in place for supplemental feedings. None of this has stopped her from doing what she truly loves: dancing.

In fact, two weeks after being in isolation, Tayla was performing in a national competition, and has gone to dance practice with the g-tube in place.

“She’s the strongest person I know,” Jill said. “No matter what you put in front of her, she just continues to go.”

Tayla’s words of wisdom remained simple and matter-of-fact. “Think positive, not negative.”

The benefit will begin at 7 p.m., with tickets priced at $25 for adults, and $20 for students and senior citizens. Tickets can purchased at Wegmans and at the Smith Opera House at 82 Seneca St. Proceeds will benefit the Immune Deficiency Foundation.

Daily Messenger writer Kelli O’Brien can be reached at (585) 394-0770, Ext. 272, or at kobrien@messengerpostmedia.com.