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

Spread the love

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.



Local News

Funeral2

Obituaries February 29, 2024

Spread the love

Spread the loveROSAURA GALLARDO Rosaura Gallardo, age 88, of Chicago, South Lawndale community, passed away unexpectedly February 8. She was the beloved wife for 63 years to the late Francisco Gallardo; loving daughter of the late Jose Elias Negron and the late Rosa Irizarry Negron; cherished mother of Guadalupe Gallardo, Gloria (Luis) Martinez, Francisco Jr.…

Steve Palmer, chairman of the Brew Moon Festival; Susanna Decker of Community Support Services; and McCook Mayor Terrance Carr pose with the oversized check donated from the festival. (Photos by Steve Metsch) 

Brew Moon raises $33,000 for two charitable organizations

Spread the love

Spread the loveBy Steve Metsch Two local charitable organizations will benefit from the 12th annual Brew Moon Beer & Band Festival held in October at the MAX in McCook. The Kelli Joy O’Laughlin Memorial Foundation, based in Indian Head Park, and Community Support Services, based in Brookfield, each received $16,500. Checks were presented to representatives…

Mario DePasquale

Ex-McCook police chief sentenced to 27 months in extortion plot

Spread the love

Spread the loveBy Bob Bong Mario DePasquale, the former police chief of McCook, was sentenced last week to more than two years in federal prison after pleading guilty last year to conspiring with the village’s former mayor to extort two businessmen out of tens of thousands of dollars. DePasquale, 50, was sentenced February 21 to…

stealing Mail

Palos Heights police bust mail theft ring

Spread the love

Spread the love3 arrested for allegedly stealing mail in Palos Heights, Palos Park By Jeff Vorva The good news is that lost mail involving residents of Palos Park and Palos Heights has been found. The bad news is that it may be a while before they get that mail back. Three people were arrested for…

Shepard High School junior, Anastasia Kladis, has raised nearly $2,000 for Special Olympics Illinois and hopes to keep the amount growing before she takes the plunge at Shepard High School on March 7. (Supplied photos)

Shepard student to take the Polar Plunge for Special Olympics

Spread the love

Spread the loveBy Kelly White One Shepard High School student has been excelling in raising funds for this year’s Polar Plunge. Anastasia Kladis, a junior from Palos Heights, has raised nearly $2,000 for Special Olympics Illinois and hopes to keep the amount growing before she takes the plunge at school on March 7. “I have…

Evergreen Park senior Nolan Sexton drives past a Thornton defender during the Wildcats' 77-47 win over the Mustangs in the Class 3A Thornton Sectional on Feb. 27. Photo by Xavier Sanchez

Boys Basketball Class 3A Sectionals | Evergreen Park’s historic ends with loss to Thornton

Spread the love

Spread the loveBy Xavier Sanchez Correspondent The 2023-2024 Evergreen Park boys basketball team had one of the greatest seasons in program history. Unfortunately for the Mustangs, that season has come to an end with a 77-47 loss to Thornton in the semifinals of the Class 3A Thornton Sectional on Feb. 27. Evergreen Park was coming…

CRR_NH

Clear-Ridge Reporter and NewsHound February 28, 2024

Spread the love

Spread the love

Mary Stanek

Looks like March may go out like a lion

Spread the love

Spread the love. By Mary Stanek Your correspondent in Archer Heights and West Elsdon 3808 W. 57th Place •  (773) 517-7796. . March comes in like a lamb – it goes out like a lion! A sneak peek at the weather forecast for the next 10 days does show some mild days. So, we welcome…

Kathy Headley

Weather cooperated for Marine’s return

Spread the love

Spread the love. By Kathy Headley Your correspondent in Chicago Lawn and Marquette Manor 6610 S. Francisco • (773) 776-7778 . After the surprising snow coming down like a blizzard for a while last Friday night, I was especially glad to see the sun Saturday morning, for Patrick Downs (St. Rita High School class of…

Peggy Zabicki

Slam the brakes on reckless drivers

Spread the love

Spread the love. By Peggy Zabicki Your correspondent in West Lawn 3633 W. 60th Place •  (773) 504-9327 . The most popular topic of conversation in our neighborhood lately is the problem of speeding drivers. There are car accidents every single day due to drivers who break the law. I hope the city will add even more…

Neighbors

Cook County judge orders Trump removed from GOP ballot but holds decision pending appeal

Cook County judge orders Trump removed from GOP ballot but holds decision pending appeal

By PETER HANCOCK Capitol News Illinois phancock@capitolnewsillinois.com SPRINGFIELD – A Cook County judge on Wednesday ordered former President Donald Trump’s name to be removed from the March 19 Republican primary ballot but stayed her order until Friday to give time for an appeal to the Illinois Supreme Court. In a lengthy decision, Judge Tracie Porter…

Pritzker to mull tightening fiscal landscape in budget address this week

Pritzker to mull tightening fiscal landscape in budget address this week

By JERRY NOWICKI Capitol News Illinois jnowicki@capitolnewsillinois.com Gov. JB Pritzker will give his sixth state budget address this week, laying out his plan for a fiscal year that government forecasters in November predicted is on pace for a near-$900 million deficit unless corrective action is taken.  Those same fiscal forecasters in the Governor’s Office of…

Ahead of Pritzker’s budget address, pressures that mounted last year intensify

Ahead of Pritzker’s budget address, pressures that mounted last year intensify

BY JERRY NOWICKI Capitol News Illinois jnowicki@capitolnewsillinois.com Republicans in the Illinois Senate indicated Tuesday that their sticking point for budget negotiations this year will be the same as it was last year – state spending on programs for noncitizens and recent arrivals from the country’s southern border.  In what’s been a rarity over the past…

‘This place is horrific’: 10-week-old complaint details ‘filthy’ conditions at Centralia funeral home

‘This place is horrific’: 10-week-old complaint details ‘filthy’ conditions at Centralia funeral home

By BETH HUNDSDORFER  Capitol News Illinois news@capitolnewsillinois.com The pictures that are said to depict the condition of the embalming room of the Moran Queen-Boggs Funeral Home in Centralia are shocking. Eight photographs and one video taken late last year purported to show the conditions of the funeral home depict piles of dirty sheets, a dead…

Capitol Briefs: Pritzker touts manufacturing training funding, announces cultural districts

Capitol Briefs: Pritzker touts manufacturing training funding, announces cultural districts

By CAPITOL NEWS ILLINOIS news@capitolnewsillinois.com Gov. JB Pritzker was in Normal Tuesday to call attention to recent state funding for manufacturing training academies – including at Heartland Community College.  The governor and college officials celebrated the new 45,000-square-foot facility that opened in January. It includes remodeled space to support programs such as robotics, HVAC, welding…

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

By DILPREET RAJU Capitol News Illinois draju@capitolnewsillinois.com State and community leaders on Monday celebrated the planned opening of a new freestanding birth center on Chicago’s South Side while emphasizing proposed maternal health spending increases in Gov. JB Pritzker’s budget. The nonprofit Chicago South Side Birth Center will mark the city’s second active midwife-led birth center,…

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

By DILPREET RAJU Capitol News Illinois draju@capitolnewsillinois.com State and community leaders on Monday celebrated the planned opening of a new freestanding birth center on Chicago’s South Side while emphasizing proposed maternal health spending increases in Gov. JB Pritzker’s budget. The nonprofit Chicago South Side Birth Center will mark the city’s second active midwife-led birth center,…

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

By DILPREET RAJU Capitol News Illinois draju@capitolnewsillinois.com State and community leaders on Monday celebrated the planned opening of a new freestanding birth center on Chicago’s South Side while emphasizing proposed maternal health spending increases in Gov. JB Pritzker’s budget. The nonprofit Chicago South Side Birth Center will mark the city’s second active midwife-led birth center,…

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

By DILPREET RAJU Capitol News Illinois draju@capitolnewsillinois.com State and community leaders on Monday celebrated the planned opening of a new freestanding birth center on Chicago’s South Side while emphasizing proposed maternal health spending increases in Gov. JB Pritzker’s budget. The nonprofit Chicago South Side Birth Center will mark the city’s second active midwife-led birth center,…

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

New birth center to open on Chicago’s South Side as Pritzker touts proposed maternal health spending

By DILPREET RAJU Capitol News Illinois draju@capitolnewsillinois.com State and community leaders on Monday celebrated the planned opening of a new freestanding birth center on Chicago’s South Side while emphasizing proposed maternal health spending increases in Gov. JB Pritzker’s budget. The nonprofit Chicago South Side Birth Center will mark the city’s second active midwife-led birth center,…