Just Different – Columbia Metropolitan Magazine
The GGC, based in Greenwood since 1974, provides diagnostic testing and clinical genetics services, in addition to ongoing care for families affected by genetic diseases, birth defects and autism. Satellite clinics are located in Greenville, Charleston, Florence and Columbia. The GGC also conducts extensive research in the field of medical genetics, with the aim of developing both preventive and restorative therapies.
Stephanie, who worked for the McLaren & Lee law firm, took time off to manage Tiffanie’s visits with nearly a dozen doctors, a physiotherapist and a social worker. She also returned to school at Midlands Technical College to study childcare, in part to understand how Tiffanie stacks up against other children.
“I just wanted to know what was going on,” says Stephanie, “but I realized that nothing was happening with her because all children just need love. They need that support, and that’s what she has. When Dr Grooms told me she was late, it was like a punch in the stomach. I felt dizzy and had to sit down. I couldn’t believe it because I never smoked and never took drugs.
Despite her distress over Tiffanie’s diagnosis, Stephanie says she finally came to a constructive conclusion: “It’s not where we thought we were going, but it’s just as beautiful. My plans may have changed, but my goal was always “how can I give her the quality of life she deserves?” “”
When Tiffanie was in the hospital – up to eight months a year – Stephanie allowed medical students to learn about Rett syndrome by visiting her. Few doctors and nurses knew about Rett syndrome then outside of what they could read in medical journals and textbooks.
“The medical students were standing around the bed and watching, as the doctor explained the repetitive movements of the hands, the back and forth, the breathing, she didn’t want to release the air from her belly,” says Stephanie.
Towards the end of Tiffanie’s life, surgeons trying to alleviate her gastrointestinal distress would be discouraged by their inability to cure her. Stephanie remembers talking to them as if they were her children. “I would say, ‘I know you are fighting for her. You are only doctors, not gods. I don’t want you all to feel like you haven’t done anything for her. I know you did stuff for her. God has the last word. God gave you to me to use as a tool. ‘ ”
Tiffanie also had seizures, a curvature of the spine and the inability to walk or speak. Stephanie met girls and women with Rett syndrome who were able to walk. Little is known about life expectancy with this rare disease, but statistics indicate that almost all patients reach the age of 10 and some live to adulthood.
At the age of 3, Tiffanie, who had to be carried everywhere, was equipped with a wheelchair. It didn’t bother her, says Stephanie, and she became a social butterfly, invited to hang out with lots of friends.
“She’s been through it all and that’s why I’m so happy with her life,” says Stéphanie. Tiffanie’s friends and cousins put her in swimming pools and on roller rinks, and she did rides at Disney World.
Stephanie admits that her relationship with Tiffanie’s father suffered and they eventually broke up, but, she says, “he loved Tiffanie and she loved him. In the end, they looked alike and they were friends. The extended Hayes family, as well as the Gives family, joined teachers and friends at Tiffanie Church in providing emotional support. When Stephanie first arrived at her church, Oak Grove Baptist Church in Elgin, she felt really broken and it took a while for her to feel comfortable.
“I was confused,” says Stéphanie. “I was crazy. I got this ‘Why me?’ kind of thing going on. I just really needed some advice and didn’t know it. That’s when Tiffanie’s teacher, Sherrie Burroughs, walked in. While I was heading back to the school, she would take Tiffanie to Bible school and have me pick her up from church.I had stopped going to church.I was angry with God and had my own pity party.
Stephanie’s parents encouraged her to go to work at the Strom Thurmond Federal Building Daycare, even when Tiffanie was in the hospital. Her mother reminded her that her bills still had to be paid.
Two blessings have come from continuing Stephanie’s work. Childcare turned out to be Stephanie’s niche, and spending time with her students was cathartic, giving her the energy she needed to care for her own daughter. And, despite Stephanie’s refusal to start dating again, in 2008, friends in the Federal Building encouraged her to date Henry Winckler, who worked for Homeland Security. The couple have now been married for five years and Stephanie enjoys being the stepmother to Henry’s grown sons.
Stéphanie maintains Tiffanie’s memory by writing and illustrating children’s books. This year she published her second book, Mom and me under the magnolia, a mixed illustration from Tiffanie’s childhood in Colombia. His first book, The best girlfriends ever, pays tribute to all the women and girls who have protected and raised Stéphanie and Tiffanie in difficult times. Stephanie’s mission now is to bring people together to support each other and help find a cure for Rett Syndrome. October is Rett Syndrome Awareness Month.
On Saturday, October 16, at Sesquicentennial Park, Stephanie is hosting the second annual South Carolina Strollathon, an event run by the International Rett Syndrome Foundation. Last year, the event was virtual and raised almost $ 7,000, and Stéphanie points out that all the money raised is intended for South Carolina.
Everyone is welcome to participate. Registration for Sesquicentennial Park is at 9 a.m. and the walk begins at 10 a.m. The South Carolina Strollathon aims to connect families affected by Rett Syndrome and to raise funds. This year’s theme is #OverpowerRett.
“If people want to know where their money is going,” says Stephanie, “it goes to the Greenwood Genetic Center. While the funding is primarily used for research, it also covers other costs for children with Rett syndrome, such as transportation to medical appointments. This year, Stéphanie is particularly excited about the idea of socializing with other families affected by Rett syndrome. She wants to honor the memory of her daughter by sharing what she has learned.
“Don’t hide your children,” Stephanie tells parents of medically fragile children, “because they know everything, and they sense everything that is going on around them – the sounds, the smells, the activities. They adore it. Don’t keep them away from others and don’t worry about what people will think or say. A lot of times people would come to me and say, “What’s wrong with your baby? And I would say, ‘Nothing. What’s wrong?’ They laughed and said, “Nothing. And I would say, ‘There’s nothing wrong with it. She’s just different.
Editor’s Note: To register or donate to the South Carolina Strollathon, visit Events.RettSyndrome.org/goto/StephanieGWinckler2021
Stéphanie’s books can be purchased on TiffanieIsHope.org