Until a couple years ago, Phoenix Oberg was an average child living in the Valley with her older brother and parents.
Now, Phoenix, 7, is living with a rare genetic disease called metachromatic leukodystrophy, which affects one in 40,ooo to 160,000 children in the United States. Less than a handful of medical centers in the entire country are able to treat the disease.
Phoenix is in the juvenile stage and the disease has three stages.
“It attacks the brain and the central nervous system,” said her mother, Stephanie Sallee-Oberg of Staunton.
Sallee-Oberg said that Phoenix was always developmentally behind. At age 4, her teacher at Wayne Hills Preschool Center in Waynesboro wanted a referral for Phoenix to be evaluated. Phoenix was diagnosed with severe ADHD and prescribed medication. She started kindergarten.
“It seemed to be doing OK for a little bit,” Sallee-Oberg said.
However, Phoenix began to regress developmentally. She began to suck her thumb again, which she did not even do when she was a toddler, and she was no longer potty trained.
“I knew something was wrong. She would stare off into space,” Sallee-Oberg said. She wanted a neurologist referral for her daughter to UVA.
An EEG at UVA in October 2022 revealed that Phoenix’s brain waves were slowing, but she was not experiencing seizures. In January 2023, an MRI to rule out a brain tumor convinced doctors that Phoenix has metachromatic leukodystrophy.
By this time, Sallee-Oberg and Ryan Oberg’s daughter was having difficulty walking.
Phoenix spent 2023 attempting different treatments. Her gall bladder was recently removed because of tumors. She wears leg braces because she has cerebral palsy. Eventually, she will have to use a wheelchair.
“She probably won’t live past 13,” Sallee-Oberg said of her daughter’s prognosis.
According to Sallee-Oberg, both parents must be carriers of metachromatic leukodystrophy for a child to have the disease. And it is rare for an individual to carry the gene. Only 20 to 25 percent of carriers give it to a child. Oberg and Sallee-Oberg’s son, who is 12 years old, is just a carrier. He does not have the disease. When he marries, he will have to discuss with his spouse the possibility of their child having the disease.
“I recommend anybody get genetic testing when they decide to have kids, then they can decide whether they want to take that chance,” Sallee-Oberg said.
Sallee-Oberg has been driving Phoenix to and from hospitals for treatment and is hoping to buy a reliable van that can later be modified for wheelchair access. A van can cost up to $40,000.
The Crimora Players will perform three benefit performances next weekend for Phoenix.
“I Don’t Have a Clue,” Crimora Players’ first production of 2024, is set in Carol Robertson’s home where she is hosting a 1920s murder/mystery dinner. The show within a show becomes more comedic when Robertson’s daughter finds a bag of cash in the nearby park that belongs to local gangsters and the gangsters invite themselves to dinner.
“A lot of mistaken identities,” said Teresa Stewart with Crimora Players.
Audience members looking for good, wholesome entertainment with a good meal will enjoy Crimora Players. “We’re your spot,” Stewart said.
Crimora Players usually performs theater productions written by cast members but “I Don’t Have a Clue,” written by Craig Sodaro, was purchased by the group for this month’s performance.
Stewart said the theater group’s fundraising goal is to always donate at least $2,000.
“And doing it for a child is always a good fundraiser, you always get more support. People always like helping out a child,” Stewart said.
“I Don’t Have a Clue” will be performed Friday, February 16, 2024 and Saturday, February 17 at 6:30 p.m., and Sunday, February 18 at 1:30 p.m. at Crimora Community Center, 1648 New Hope & Crimora Road, Crimora.
Seating is limited to 170, so audience members are encouraged to call or email ahead for tickets: [email protected] or Irene at 540-943-9967 or Teresa at 540-487-0526.
Approximately 50 local actors are the Crimora Players, and they have four or five shows scheduled for 2024. The next show is scheduled for April 26 to 28, 2024.
Phoenix, a 2nd-grader at Stuarts Draft Elementary School, attends school a couple hours a day. Her mother said that her classmates are kind to her. Sallee-Oberg said it is important for her classmates to learn how to be around children like Phoenix, who is no longer verbal.
Sallee-Oberg said she can understand her daughter from what noises she is able to make and anticipate what she needs.
“Phoenix is a real trooper,” Sallee-Oberg said.