BILLINGS - Andrew Degenhart wants to be a running back for the Seattle Seahawks, and his twin brother, Brandon, wants to be a singer, like Bruno Mars. But first they have to get through the second grade.
The boys, age 8, are full of energy and charisma. They run circles around their mom, Jessie, so it’s hard to understand that they are dealing with ectodermal dysplasia, which is a rare genetic disorder that results in abnormalities of the hair, teeth, nails and facial structure. The worst part is they can’t sweat, which makes them “feel like lava,” Andrew said, when they exercise — especially during the summer months.
The disorder is what brought them to the attention of cable television's TLC, which launched a new series in April called “Two in a Million,” a documentary that brings two people together for the first time who share the same medical condition. The Degenharts’ episode will be the last in the series. It airs Wednesday at 8 p.m.
Andrew and Brandon are taking their new fame in stride. On Friday, they seemed more excited about having a sleepover at the home of their best friend, Matthew Plum, than being on television.
TLC producers Jonna McIver and Charlotte Dawes came to Billings to film the boys in August and September 2015, then returned in January to get more footage.
“They are so funny, but so sad,” Dawes commented.
Jessie explained that the twins were very sick before they started school, and because their disorder is so rare, doctors did not immediately diagnose it. The boys spent two years of their lives in hospitals and were eventually treated at the Denver Children’s Hospital.
The National Foundation for Ectodermal Dysplasia found that there are 150 different types of the genetic disorder and that it affects seven in every 10,000 babies born.
Andrew and Brandon attend Eagle Cliffs Elementary School where their teacher, Vicki Dringman, makes learning fun, Andrew said.
“I like reading about all the presidents and about the Wright Brothers,” he said.
But there are tough days in school because sometimes the twins are bullied, Jessie said. Brandon said he hopes the TLC show will change that.
“It will be about how hard life is and how we’re trying not to get bullied,” Brandon said.
TLC found the Degenhart family on Facebook and asked them if they would like to be paired with another child who has the same disorder that Andrew and Brandon have. They located Josh Johnson, of Texas, and flew him and his mother to Billings to spend a week with the Degenharts in 2015.
The twins had never met anyone with ectodermal dysplasia before. Josh, 11, was like a big brother to Andrew and Brandon, showing them how to keep their new dentures in place — Andrew has three teeth and Brandon has two, so the boys were fitted with dentures. Josh also bonded with them over video games.
“Josh is fun, and he’s good at Minecraft,” Andrew said.
The Degenherts have three older children who also grew close to Josh.
“Even my daughters liked Josh. When he got home, he sent them bracelets from Texas,” Jessie said.
The Degenharts were treated to their first-ever family vacation in 2015 through the Montana Hope Project, a Montana Highway Patrol effort to grant wishes to children who are dealing with life-threatening illnesses. Andrew achieved his goal on the trip to Disney World, which was to learn to talk like Donald Duck.
He purses his lips and sucks air in to quack out, "I'm a duck."
Jessie hasn’t seen a trailer for the episode yet, but she knows there will be laughter and tears.
“Usually, I just dealt with things and never really thought about how hard it was,” Jessie said. “When people ask, ‘How do you deal with this?’ it just brings out all the emotions, and makes me think, ‘How do I do it?’”
Andrew and Brandon loved goofing around with McIver, who is British. They have his British accent down and enjoy introducing themselves, pretending to be a Brit.
“My favorite part was when Jonna was doing a back flip on the trampoline and he fell off,” Brandon said.
The boys’ spirits were lifted so much through the experience of being filmed for the show that they would walk up to strangers and tell them about it.
“When we were at Wal-Mart one day, Andrew walked up to this man and said, ‘We’re going to be on TLC, dog.’”
Jessie laughs when she sees Andrew and Brandon challenging each other to a foot race. They weren’t always this healthy and happy, but their spirits have always been strong, she said.
“They have always been crazy fighters,” Jessie said.