Living Her Best Life
August 2021 Issue
By Cynthia Robinson
Photography (above) by Mike Force Photography
According to Debbie Purvis, her now 27-year-old daughter Ashleigh doesn’t let the challenges of living with Down Syndrome stop her from a full, active life. “I think Ashleigh is living her best life,” she said, as Ashleigh smiled and nodded in agreement.
Debbie and her husband Steve already had a son, Corey, when Ashleigh arrived. “We had no idea that she had Down Syndrome until she was born,” said Debbie, a longtime local registered nurse. “I had all the testing, but everything came back negative. She was also born with a heart defect, which is very common in children with Downs, and that wasn’t detected either until after her birth.”
Most of the challenges their family faced in Ashleigh’s younger years revolved around her health issues. “She had a lot of doctors’ appointments, and most of her appointments were in Savannah with the pediatric cardiologist, or at Nemours in Jacksonville. As a baby she had physical therapy, occupational therapy, speech therapy and even went to music therapy for a while,” Debbie said. Fortunately, Ashleigh had successful open-heart surgery at Egleston Children’s Hospital in Atlanta when she was 2 years old, and today enjoys a mostly healthy life.
While Ashleigh thrived, Debbie said resources for differently abled children and their families were lacking. “Resources, support groups, school inclusion and inclusion in regular sports and activities were not as common when she was little as it is today. She did participate in Buddy Ball and Buddy Soccer until she aged out, and she also participated in a fishing tournament in Waverly for children up to 18.”
When Ashleigh was 15 and a student at Brunswick High School, she competed in a Special Olympics fishing rodeo. “I really like to fish,” she said with a big smile.
“As she grew up, we started to worry more about her future and what was going to happen after high school,” Debbie said. “The challenge was more about keeping her active, busy, protected, safe, social and continuing to be academically challenged. We are so thankful there are so many more resources, groups and activities now!”
One of the activities Ashleigh enjoys is acting in the Golden Isles Penguin Project, a musical theatre production put on each summer since 2017 (except for 2020 due to Covid). Each cast is made up entirely of children and young adults who have special needs. Ashleigh has acted in all the productions. “Bye, Bye Birdie was my favorite,” she said. “I was Mrs. MacAfee. I liked playing her because she was bossy!”
She also said she liked playing another “bossy” role—that of the Captain of the Guards in Shrek. “I think she likes bossy roles because she is anything but bossy,” Debbie said, smiling.
Another local non-profit, SOAR (Social Opportunities & Active Recreation, Inc.), is open to any adult with developmental disabilities and has given Ashleigh more opportunities to make new friends and enjoy events, health-related activities, excursions and sports. Ashleigh also continues to learn and expand her horizons with the help of two part-time teachers, both retired Glynn County educators. One of her teachers, Pam Smith, also takes Ashleigh to her twice-a-week job at Cheek-to-Cheek Hospital for Animals.
“I really like feeding the outside cats,” said Ashleigh, who also feeds some of the other animals and performs duties, such as folding towels and blankets and cleaning up around the facility. “Alice the cat is her favorite,” Debbie said. “Ashleigh gives her a lot of TLC.” Her other teacher, retired para-pro Jackie Thomas, takes her to her other jobs such as the library, area churches and Hello GoodBuy, where she and fellow students assist with things such as cleaning. The students also regularly exercise together and continue their studies. “I like math and science,” Ashleigh said.
Ashleigh learned to horseback ride as a little girl and continues to love the activity. “I like to ride on Jekyll,” Ashleigh said, while Debbie said the entire family also likes to ride on their frequent trips to Gatlinburg. “We have a small travel trailer and go camping together once-a-month. We take a three-day weekend and hike and fish and ride bikes. We also love to visit places with lots of waterfalls.” Debbie added that Ashleigh is particularly excited to have her big brother Corey home now that he has completed his service with the Air Force.
While Debbie said she has no doubt that Ashleigh will continue to blossom and enjoy life to the fullest, she wants to dispel one myth about people with Down Syndrome. “People think people with Down’s are just happy all the time. That’s not true. They have good days and bad days. They get grumpy just like the rest of us. But one thing is for sure—if Ashleigh knows you, then you are her friend, and she loves you.
“The main thing I would like people to know about Ashleigh is that she does not even comprehend hate, jealousy, division, turmoil, anger, or resentment,” Debbie said. “I feel like Ashleigh and ALL people who are differently-abled have so much to give, and we as a society have so much to learn from them. My husband and I have always said that she has taught us far more than we could ever teach her!”
Favorite Movie: “Alvin and the Chipmunks!”
London Calling: Ashleigh and her parents went to England in May 2019 to visit Corey, who was then stationed just outside of London with the Air Force. Ashleigh’s favorite part was visiting Buckingham Palace, but she was slightly disappointed. “I didn’t see the Queen. I wanted to meet and bow to the Queen.” She did say the palace guards were really cool, and she liked riding on a double-decker bus and the Tube.
Local Cuisine: Ashleigh loves to eat out. “At Southern Soul, I like the chicken and ribs and at Marshside (Grill), I get the shrimp bowl.”
Furry Friend: The family’s “Heinz 57” rescue dog, Bella.
Night On the Town: Ashleigh said she loved getting dressed up when she attended one of Tim Tebow’s “Night to Shine” prom events, held around the country, for people with special needs. “It is a great, fun event. They have limousines and a photo booth and ‘paparazzi.’ Corey wants to volunteer with them now,” said Debbie.