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Concert will benefit Drums girl with rare genetic disorder

Standard-Speaker - 4/27/2017

April 27--Juliann Tompkins, 7, can't walk, much less pedal a bike on her own -- but she's able to turn the wheels on an adaptive tricycle.

"She actually started pedaling it by herself," said her mother, Christina Tompkins, of Drums. "It was a huge milestone for us and she was very excited."

Juliann has Cockayne syndrome, a rare and fatal genetic disorder that causes developmental delays and a failure to thrive in other ways.

To help purchase the trike, the National Student Speech Language and Hearing Association chapter at Misericordia University, Dallas, will hold a "Wheels for Juliann" benefit concert at 3 p.m.May 6 from Lemmond Theater in Walsh Hall.

The concert features Beyond Harmony, the university's female a cappella group, which will perform various hit songs by popular artists. The student Dance Ensemble will also perform.

Christina said the trike will benefit Juliann in many ways.

"Just to have the family time," Christina said. "She loves to take the dog for a walk and we push her in her wheelchair."

She sometimes rides her bike, but she can't pedal and has to be supported by someone.

The tricycle will allow her to be more independent. Instead of needing someone to push or support her, she'll be able to navigate on her own.

Juliann, a life skills student at Valley Elementary School, was diagnosed with Cockayne syndrome in 2011. She's one of only a few hundred in the world with the disorder, her mother said.

In addition to developmental delays, those with Cockayne's typically have small heads and an oversensitivity to light. When Juliann goes outside, she must be slathered in sunscreen and wear a hat and sunglasses.

Christina said when someone with Cockayne's loses a skill, it's gone forever. It can't be reclaimed.

"Her mobility is really what we're striving for. She doesn't walk but she does crawl," she said.

Despite her disabilities, Christina said her daughter is a "very loving" and "very social" girl.

"She loves being around people. She's touched thousands of people's lives," she said.

Juliann also loves being in the water and takes special needs swim classes at the Hazleton YWCA.

Tickets for "Wheels for Juliann" will be available Monday to May 5 from 11 a.m. to 1 p.m. in the Banks Student Life Center lobby at Misericordia. Tickets will also be available at the door for $5. Doors open at 2:30 p.m.

Students will also accept donations at the event.

People who wish to contribute may mail checks to Misericordia University Speech-Language Hearing Center, Attn: Wheels for Juliann, John J. Passan Hall, 100 Lake St., Dallas, PA 18612.

Any proceeds raised beyond the cost of the tricycle will benefit Brighter Journeys, a Luzerne County nonprofit dedicated to helping families that have children with special needs. Brighter Journeys provides programming and helps families secure necessary items that are not covered by insurance or are out of financial reach for parents.

For additional information, contact chapter President Elizabeth Heinmiller at heinmile@misericordia.edu.

Contact the writer: jwhalen@standardspeaker.com; 570-501-3592

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(c)2017 the Standard-Speaker (Hazleton, Pa.)

Visit the Standard-Speaker (Hazleton, Pa.) at standardspeaker.com

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