Gathered around the family dining table, Skylar, Savannah and Bellamy Arterburn seem like any three sisters enjoying an after-school snack.
Pull back a bit, though, and a different picture emerges: Lime-green walkers lean against the front door, and the dining table occupies about a third of the kitchen/living room in the tiny house the three girls share with their older sister, Madison, 14, cousin Audrey, 16, and aunt Heather Arterburn, 40.
In addition to their blond hair, oval glasses and ready grins, 11-year-old twins Skylar and Savannah, and Bellamy, 13, share a genetic condition called Friedreich’s ataxia that strikes about one in 50,000 people. In the Arterburn family, it affects three out of four and could eventually rob them of their ability to walk, hear and see.
Before that happens, the girls are using their bodies and brains to the fullest, thanks to scholarships from the National Sports Center for the Disabled, a Denver-based nonprofit that provides recreational opportunities in 20 winter and summer sports. NSCD is among the agencies applying for funding in this year’s Season to Share program.
Bellamy likes snowboarding. Savannah discovered she’s a “natural rock- climber” and hopes to try rappelling again.
Skylar loves horseback-riding, except for “the hurting of the butt.”
Those trips have been highlights in a hard year for the family. The girls’ mother died on Madison’s birthday, and their dad is struggling with his own demons, so Aunt Heather was awarded legal custody in July and they all crammed into her west-side house. The stairs are so steep that the girls can’t use their walkers, which take up too much space inside anyway. They need help climbing the narrow steps and have to scoot down on their bottoms.
“I have a secret dream; I’m hoping to get on ‘Extreme Makeover Home Edition,’ ” says Heather, not really joking. “I would love to have adequate housing with a bathroom on the same level as the bedrooms.” Caring for the girls is her full-time job, but she volunteers at NSCD. She pays $700 a month in rent, out of their $1,882 monthly disability payments.
Madison, Audrey and the twins attend the Denver School of the Arts, and Bellamy is in the Highly Gifted and Talented program at Morey Middle School. When classmates ask what’s wrong with her legs, Bellamy tells them she has a muscle disease. “I prefer they walk up and ask me rather than just stare. It’s a lot meaner when they stare,” she says.
“It was really annoying when we went to Disney World,” chimes in Skylar. “I just wanted to scream, ‘Stop staring at me!’ But when little kids ask about my walker, I’m like, ‘Hello, little person, I need this so I can walk better.’ “
Heather says the sports programs have also helped them to walk better.
“The more they use their muscles, the better they work,” she says. “I see improvement in their bodies.”
Kristen Browning-Blas: 303-954-1440
National Sports Center for the Disabled
Address: 1801 Bryant St., Suite 1500
In operation since: 1970
Number served last year: 3,800 clients/22,000 lessons
Staff: About 60, including seasonal workers
Yearly budget: $4.3 million
Percentage of funds directly to clients/service: 80%
