Los Angeles – The rare genetic disorder that is diagnosed incorrectly as autism steals a young girl in California in her life.
With no known treatment or treatment, her parents treat an impossible dream: find a treatment and we hope that others will help along the way.
Vivian Redik’s story
As a baby, she showed a two -year -old Vivienne Redick look at the slightest idea that her parents could not explain.
“I did this little staring, and I didn’t know that this was a seizure. It was very fast,” said my mother, Evit Redik.
Vivienne is the Ivitte and Shawn Redik III child. Her pregnancy and birth was in good and routine.
“She is a happy child,” Evit said.
While Vivian looked somewhat late, her mother did not see the cause of concern until her daughter was about eight months old when she had a high fever. The pediatrician saw episodes.
After a battery of the tests, the genetic sequence revealed that Vivian was suffering from a rare gradual genetic disorder called BPAN, which symbolizes the neurotransmitter associated with beta protein.
Time is not on the side of Vivian.
“Most girls are affected,” Evit said. “It is progressive, and it gets worse over time. They don’t have a long time,” Evit said.
What is BPAN?
BPAN was first identified in 2012. At that time, there were about 100 known cases. Now, scientists estimate that there are about 750 around the world.
BPAN is not inheritance. It is a genetic mutation on the X chromosome can happen randomly. With very few cases, there is no known treatment or treatment.
“Many people told me, it is not even in our system, we don’t know about this. We cannot help you,” Evit said.
As Hollywood directors, Redicks do what they know better. They communicate, communicate and get the story of their daughter there.
The couple created an advertisement on public service.
“Our world has changed dramatically when Vivienne was diagnosed with rare genetic disease,” Sean Redik said at PSA.
They found hope in the first world BPAN Clinic at the Children’s Hospital in Philadelphia.
Scientists work on a new way to penetrate and transfer DNA information to brain cells.
Dr. Laura Adeng said with Chop: “The hat is the outer of the virus, and we use it as a circumstance to provide new information to the cells, and therefore there is great interest, and many of them are driven by teams in Chop in developing new or modified forms of this hat.”
“I think their suggestion for five years, which is about $ 2 million annually, so it is not inexpensive,” said Evit.
The couple works with beatbpan.org To finance this research.
A dream is impossible, but one of the Vivian family believes it is within reach.
“I am enthusiastic about the capabilities. As you know, there can be a cure. You can, like, live a long life, maybe? I don’t know, and I want it to her.”
Vivienne learns and progresses, but BPAN patients often reach their peak in adolescence and then refuse.
This disorder is often diagnosed with autism, and researchers estimate that there may be thousands in the United States with BPAN and they do not know this. Redicks hope for your help, and they can help Vivienne and many of them.
“I want it with us. Everyone believes that they can help, and this means a lot,” said Evitte.
Publishing rights © 2025 WPVI-TV. All rights reserved.