“Scary. I really wish I wouldn’t have heard it,” says Daniel Moore, father of Aurora Peterson. “Nobody wants to hear that about your kids.”
It’s news no parent ever wants to hear.
A little girl in Chase, MI is battling a disease that baffles doctors that could change her life forever.
Aurora is a 9-month-old girl who lives in Lake County.
When she was born, her parents discovered she was deaf.
Doctors quickly found possible signs of a disease that could threaten her life.
“She’s a happy one, but she knows she’s been through a lot,” says Alicia Peterson, Aurora’s mother.
Little Aurora Peterson smiles, laughs and cries.
But from day one, something wasn’t right.
“It started when she was born,” Moore says. “She failed her hearing test. We had to wait after that until she was six months to get an MRI and then to get fitted for hearing aids.”
Daniel and Alicia’s daughter was deaf.
Then, a worse sign was discovered.
“Her very first MRI, that’s when she, we noticed the VanderKnaap disorder…maybe,” Moore says. “There were symptoms, but it wasn’t clear.”
VanderKnaap disorder is a rare disease that directly attacks the nervous system.
“It was devastating to both of us,” Moore says. “I’ve been on the phone, we’ve been traveling all over to these doctors. We have been trying to just get some answers.”
Daniel says doctors were and still are dumbfounded.
“There is no real diagnosis yet. We’re still waiting for one,” Moore says. “In the numerous batteries of tests that they did, some of them were to the point that not everything matched up to that disease, so that’s why they said there is a possibility that she didn’t have it, which really made us excited.”
Daniel looked for help and found some, but it was far.
“Philadelphia, Pennsylvania,” Moore says. “A children’s hospital is doing research on this specific disease there.”
Aurora’s parents need a second opinion and an out-of-state referral from U of M — an expensive task.
When asked for help, both say it’s not about them.
It’s about Aurora.
“You never know what’s going to happen when you have a baby or anybody,” Peterson says. “I just want to make sure people are more aware.”
“Spread that awareness,” Moore says. “Get Michigan to actually up their research on this stuff. We can’t move forward as a community unless we up our research on diseases like this one. All we can do is just spend time with her. Hope for the best.”