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As toddlers, doctors diagnosed Alex and Zoe Appel with Cockayne Syndrome and Trichothiodystrophy, two extremely rare genetic disorders. Doctors told the girls’ parents they are likely the only two people in the world with both. These disorders delay physi
The girls’ parents say the two have a special bond. “If one is sick, they want to be near each other,” Sean said. They also have a typical sibling relationship. Zoe tries to take books from Alex at school and Alex plants traps in the hallway to trip Zoe.
“(Alex) always enjoyed music as a sensory, to hear it and to feel it,” Kasie said. Alex rested her hand on the guitar strings as Eric Lund of Evansville strummed a song during a music therapy session at their home June 3. The girls both receive weekly ses
Alex’s feet have turned outward since she was little. She uses a wheelchair and is able to crawl when she’s in her classroom at school or at home.
With the girls both weighing nearly 70 pounds, Kasie and Sean work together to lift and carry them. They carried Alex to her bed June 2. Medicaid recently approved medical beds for the girls, but both parents still visit the chiropractor to help ease the
Zoe participated in music time during school May 5 at Heritage Hills Middle School.
Amy Walters cut Zoe’s hair at her Evansville salon May 21. Zoe does not like change and can often grow uneasy in a new place. When she puts her hands under her chin, it often signals that she feels anxious or uncomfortable.
Many children with TTD die at age 5. But if they are lucky, they live to be 12, and age 20 if they’re the exception to the rule. So when Kasie and Sean held a party July 19 to celebrate Alex’ 16th birthday, they had more than 100 people join them at Burde
Most home and car windows block out enough of the harmful rays that can quickly burn Alex and Zoe’s skin. Alex enjoyed the sunlight on a car ride to the chiropractor April 28.
Sean’s mother, Fran McKasson of Gentryville, often watches the girls on weekends when Sean and Kasie need to run errands or visit friends. “We get pretty anxious about leaving,” Sean said. “I worry all night about whether we need to turn around and come h
Alex and Zoe leaned into each other at Heritage Hills Middle School in Lincoln City on May 18. In school, the girls do sensory work. Zoe feels objects and Alex tries to make toys light up. But, for the most part, the band of teachers who work with the gir
Sean stays home with the girls full time. When they watch cartoons, Zoe often sits on Sean’s lap in the armchair as they did May 18. Though life may only get more difficult for the Appel girls, Sean and Kasie work to make whatever years Zoe and Alex have
20 Going on 80 - When Alex and Zoe Appel were toddlers, doctors diagnosed them with Cockayne Syndrome and Trichothiodystrophy, two extremely rare genetic disorders. Doctors told the girls’ par...
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