By Christy Swift
Photos Courtesy Jenifer Mahannah
Jenifer Mahannah found out her daughter Penelope was going to have Down Syndrome before she was born. It was difficult news for a mom-to-be to receive, but nine years later, she can’t imagine life without her special daughter.
“I want people to have more understanding of people and children with disabilities,” Jenifer says. “They may have limitations, but they have the capability of doing amazing things!”
TWO BROKEN HEARTS
When Jenifer was pregnant, her quadruple screen test for potential birth defects came back 99% positive for Down Syndrome. She decided to forgo a definitive diagnosis via an invasive amniocentesis test, but a specialist at Shands hospital confirmed her unborn daughter had a heart defect consistent with Down Syndrome.
“I was heartbroken,” Jenifer recalls. “I had never been around someone who was disabled. I didn’t know much about that community. I called my aunt, who had some experience with people with disabilities and told her about the diagnosis. Her words were: you just got a gift from God.”
Her aunt went on to tell Jenifer that children like these were special and soon she would find out why. Those comforting words lifted a burden from Jenifer, and she went through the rest of her pregnancy with a sense that everything was going to be okay. Her family also came together and supported her. Penny was born with Down Syndrome and had open heart surgery at four months old. “The surgery was such a success. She was in and out of the hospital in a week. She’s a little miracle,” Jenifer says.
FROM LONELY MOM TO LEADER
Jenifer signed up for the Early Steps program, the free early intervention system that offers services to eligible infants and toddlers who have or are at-risk for developmental disabilities or delays. A physical therapist came to the house to work with Penny, which was great, but Jenifer felt like she and her daughter were in “a lonely little world.”
“I didn’t know anybody else in the same situation,” Jenifer recalls. “I asked the therapist, ‘Do you have other families that would want to connect for friendship? Even a support group?’” Before long, her phone was ringing and she was connecting with other parents over Facebook. The need was present in the community, and so was the desire, so Jenifer decided to organize an event for families of children with disabilities. She held it on World Down Syndrome Day, March 21st (chosen because the date is 3-21, representing a third copy of the 21st chromosome). The event was organized in a local park, and Jenifer’s mother helped her put together goodie bags for each family that attended.
It was a great success, so she began to hold more of them. She also attended every Early Steps resource fair she could. “I was in Ocala at the time, but I would drive to Gainesville, Crystal Lake, and other nearby places. That’s how I started meeting the organizations that help kids and adults with disabilities, all kinds of disabilities.” She started her own non-profit, called Just As I Am. Partnering with the Olive Garden, where she worked as a server for 10 years, she organized larger events that provided free food, a DJ, a photographer to take free family portraits, and a place for children and adults with disabilities and their families to have fun and connect. While COVID put an end to those types of events, Jenifer plans to start them up again in her new community in Sebring.
PENNEY – EVERYONE’S FAVORITE COVER GIRL
They’ve helped to connect families with disabilities with resources, support, and one another, but Penny and her mom have made a difference in another big way, too—by breaking boundaries: Penny was the first child with Down Syndrome ever to be featured on the cover of the Ocala Family Times Magazine.
Penny was four years old when Jenifer saw the cover contest come across her Facebook feed. She saw it as not just an opportunity for her adorable little girl to be a cover model, but as a way to spotlight diversity in beauty. She brought Penny to the photo shoot to have her head shot taken. Ocala Family Times posted the head shot on their Facebook page along with the other photos taken that day, stating that the model who received the most “likes” would be their cover model for the December 2018/January 2019 edition.
“I gathered all my friends to share it, and we got over 4,000 likes,” Jenifer recalls. With that much support, they won the contest easily. A few months later, the official photo shoot was held, and the magazine was published featuring a cherubic Penny in a white knitted winter hat and scarf on the cover. Immediately afterward, Jenifer began receiving phone calls from people who had recognized Penny, as well as the local newspapers and radio stations. Everyone was excited to see this beautiful little girl with Down Syndrome on the cover of a popular local magazine.
“She was the first girl with Down Syndrome to grace the cover,” Jenifer said. “We’re changing the face of beauty. Beauty can come in all shapes and sizes and looks.”
INCLUSION FOR THE WIN
This wasn’t just a win for Penny and other kids with Down Syndrome, it was a win for the community at large. Often, discomfort or fears about interacting with people with a disability are based on lack of knowledge, uncertainties, and stereotypes. Regardless of disability status, everyone possesses unique talents and has something to offer. By encouraging inclusion and allowing people of all abilities to interact, everyone’s lives are enriched.
“Before Penelope, I had never interacted with the disabled community,” Jenifer says. “Now we are seeing more people like Penelope on TV. Mattel has a Barbie doll with Down Syndrome. There’s the movie Champions with Woody Harrelson.” Champions is a 2023 comedy about a former minor-league basketball coach who is court-ordered to manage a team of players who have intellectual disabilities. The cast includes ten extremely talented disabled actors chosen out of hundreds who auditioned.
“(Things like this) open up the conversation,” Jenifer explains. “Ultimately it’s about awareness and inclusion, however that may look. Equality is not giving everybody the same thing; it’s giving each individual the tools they need to succeed. There are people with Down Syndrome who own a house and drive. Penelope might be at a different learning level, but there is a place for her in the world, and she deserves every opportunity to live a fulfilling life, whatever that may look like.”
GETTING TO KNOW PENELOPE
Part of what that looks like is body- surfing! Penny loves to lie on a boogie board and ride the waves into shore. She participates in adaptive skiing through a special program and loves anything to do with the water. Penelope is also autistic and nonverbal, but that doesn’t stop her. “She loves music. She loves sounds. She loves to play with other children. She’s very social and loves to interact. Even though she can’t speak, she expresses herself,” her mom explains. Penny also has a special IPAD program she uses to communicate.
Penny will be attending the second grade at Woodlawn Elementary in Sebring this fall, and Jenifer cannot say enough good things about the teachers, staff, and administrators there. “It has been such a blessing in her growth,” Jenifer says, mentioning how helpful both the principal, Jerry Wright, and the assistant principal, Christine Gilbert, have been, along with Penny’s teachers and aides. “They have completely embraced Penelope. The teachers and the kids all know Penelope. She is so happy to go to school; she walks in there so proud!
ENCOURAGING KIDS TO BE “JUST AS THEY ARE” IN SEBRING
Jenifer intends to establish a Just As I Am program in Sebring, mirroring her successful efforts in Ocala. She says she’ll start from scratch, first by connecting with other families. “Connecting with people is my thing,” she says. “All it takes is a few. The few turn into more and more.” The mission will be to offer friendship and resources to families with all types of disabilities, not just Down Syndrome. Just As I Am can be found at www.facebook.com/justasiamkids.
Nine years ago, Jenifer’s aunt told her that her child with Down Syndrome was a gift from God. “She was more than right,” Jenifer says confidently.
