Evergreen Park resident Claudia Parker created a documentary focusing on her daughter Rhonda-Rene's rare disease and how the family has dealt with the disorder.

Evergreen Park resident Claudia Parker created a documentary focusing on her daughter Rhonda-Rene's rare disease and how the family has dealt with the disorder.

Evergreen Park resident creates doc on family

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Daughter’s rare disease is main subject of film
By Joe Boyle

Evergreen Park resident Claudia Parker was not sure where to turn when it came to the health of her infant daughter.
Parker knew that something was not right with Rhonda-Rene and continued to bring it to the attention of doctors, who would reassure her that every infant is different and there was no need to worry.
“I noticed some odd things and it was very hard for her to settle down,” Parker said. “The doctors didn’t think so but I knew. But they told me that after 18 months, they would check on her.”
After 18 months, Parker did not hesitate to ask for more thorough exams. After a series of tests, the doctors confirmed that there was an issue. It was not until Rhonda-Rene was 3 years old that Parker and her husband, Dr. Don Parker, a longtime educator, received the official diagnosis.
The Parkers were informed that their daughter had FOXP1 syndrome, a rare neurological and developmental disorder that affects both boys and girls. Symptoms of FOXP1 syndrome usually begin in infancy. Irritability occurs first, with repeated seizures happening later.
Claudia has an older daughter, Donae, and admitted that caring for Rhonda-Rene was difficult for the family. However, the Parkers were adamant about getting Ronda-Rene the best of care.

Claudia Parker had been keeping busy writing a neighborhood column for The Reporter newspaper under the title, “I, Claudia.” The column focused on family and neighborhood activities. Her husband and daughters were mentioned frequently in the column. She also wrote feature stories and took photos for the paper.
After her stint as a neighborhood columnist, Claudia developed her own business as a photographer and videographer that includes taking images of students for local school districts. Her husband retired after 30 years as an educator, with the last six as a school principal.
The couple was no longer able to afford therapy for their daughter. The Parkers knew that they had to raise more funding to assist Rhonda-Rene, whose medical expenses were astronomical.
Don has since become an educational consultant and Claudia also began working on putting together videos.
“I was overwhelmed,” Claudia admitted. “But we were going to get her the best of care. We are educators so we put in the time with her. We are both entrepreneurs. I feel for (parents) that don’t have this background and have to deal with this.”
She overheard someone talking about the Digital Storytelling Initiative, presented by the University of Chicago. The initiative — in partnership with the College Film Workshop — provides filmmakers with access and training in digital production, culminating in a public showcase of their work.
Claudia knew this could be the opportunity to tell the story of her family and Rhonda-Rene’s rare disorder. She contacted DSI who got back to her. They were interested in telling her story in a documentary short.
She was given the green light and was required to work on a screenplay for the documentary. She had a tight deadline because they had to go to production quickly. Claudia was able to fulfill those requirements.
“Rarely Have You Seen a Fox Like This” is the documentary focusing on the Parkers and Rhonda-Rene. The film will debut at the Reva and David Logan Center for the Arts, 915 E. 60th St., Chicago, on Sunday, Oct. 1.
The opening of the film coincides with Claudia’s 50th birthday and Rhonda-Rene’s 13th birthday.
Claudia credits her success in the completion of the film to DSI lead instructor Derrick Grace and Elizabeth Myles, the program manager
She had an opportunity to meet with other families who have a child with FOXP1 syndrome. Both Claudia and Don pointed out that there may be many more children who have FOXP1 syndrome but their parents are unaware because they have not received a diagnosis for the rare disease.
“We all came together over the summer in Long Island, N.Y.,” Claudia said. “To see another family who has been going through this is really something. It brought us to tears. I found my tribe.”
The Parkers have been motivated by this meeting and the challenges their family faces for a disease that affects only 386 people globally.
The film has caught the attention of filmmaker Pemon Rami, an international movie producer and director who praised Claudia’s creation, referring to it as “powerful.”
Margaret Caples, executive director of the Community Film Workshop of Chicago, also said she was excited about the documentary.
Claudia’s hope is that the film will not only shed light on FOXP1 syndrome but also inspire others to pursue their dreams, no matter what age. She has also a faith-based documentary style web series called, “Five Minutes of Faith,” which consists of more than 50 episodes.
She holds a bachelor arts degree from Benedictine University and an MBA from St. Xavier University. Claudia said that with the documentary, she is encouraged about the future.
“Our daughter Donae at first was resentful at the attention that Rhonda-Rene received,” Claudia said. “But she has come to understand and has looked out for her sister and helps her. They have grown so close.”
She said that Donae, now 16 and a sophomore at Evergreen Park Community High School, has been an A student. Donae has worked with the Evergreen Park Recreation Department and most recently has served as youth counselor at the Beverly Arts Center.
Claudia served six years on the Evergreen Park School District 124 Board and ended her term in April. She had been the vice president of the board.
“I’ve received a lot of positive feedback,” Claudia said. “It has brought a lot of people together. We have kind of laid it right out there. We pray to God, too.”
Claudia said that Rhonda-Rene has come a long way.
“The doctors said they did not know if she would ever speak,” Claudia said. “But now she speaks in short sentences. But every day, she surprises us because there is a lot going on in her.”

1 Comment

  1. Margaret Caples on September 28, 2023 at 10:22 am

    This short film has already had a powerful impact on the family and advocacy around health equity.



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