tephanie Gives-Winckler knows firsthand the grief of losing a child, yet she exudes joy and a surprising measure of spunk. The turning point came for her in a memorable dream in which her only child, Tiffanie, was in heaven, holding the hand of someone with long hair who was wearing a flowing robe. Stephanie asked her daughter if she was all right, and then she heard Tiffanie’s voice for the first time in her life.
“She said, ‘I really like it up here. I’m with my friends.’ And she started naming off all the children that passed away before her. Then she said, ‘Please tell the moms and dads not to cry for us. Tell them we are fine,’” Stephanie says.
Tiffanie Nina Simone Hayes was born in 1997 and died shortly before turning 14 due to complications from Rett syndrome. She was a student at Forest Lake Elementary in Lisa Levangie-Colon and Sherrie Burroughs’ class for medically fragile students. Lisa and Sherrie became a lifeline, providing unconditional love and support for both mother and daughter.
Stephanie says that at one point in Tiffanie’s time at the school, four girls in the class had Rett syndrome. Tiffanie passed away in the same year as two other children, one girl with Rett syndrome and a boy with another disability. The teachers shared the burden of grief with each family.
Rett syndrome is an autism spectrum disorder believed to be caused by a mutation in the MECP2 gene, which is found only on a person’s X chromosome. A healthy MECP2 gene produces a protein essential for communication between brain cells. In general, children with Rett syndrome display normal development for the first 6 to 18 months of life, then gradually begin to regress. First described by Austrian physician Dr. Andreas Rett in 1966, Rett syndrome was not fully recognized until 1983, when Dr. Bengt Hagberg, a Swedish researcher, published his findings. In 1999, scientists identified the mutation in the MECP2 gene.
Rett syndrome is a spontaneous genetic disorder, not inherited from a child’s parents. Researchers estimate that it affects only one in every 10,000 live female births. Girls are most widely affected; since girls have two X chromosomes and the genetic mutation affects only one of them, the percentage of cells with the defective gene varies among girls with Rett syndrome.
Boys, who have both X and Y chromosomes, are rarely diagnosed. However, Stephanie recently had an email conversation with television journalist Richard Engel, whose son, Henry, appears to have only a partial mutation of the MECP2 gene on his X chromosome.
Treatment for Rett syndrome is focused on managing symptoms, but scientists continue to discover information that might lead to new therapies. One particular genetic study reversed neurologic abnormalities in mice, providing hope that neurological damage might be reversible in humans.
Before Tiffanie was born, an amniocentesis indicated that she might have Down syndrome, so Stephanie was somewhat prepared to have a daughter with special needs. A beautiful child with big brown eyes and a head full of hair, Tiffanie exhibited normal milestones for much of her first year, rolling over and sitting up, but then her progress hit a plateau. When other children at her preschool were pulling up in their cribs, Tiffanie was just sitting and smiling, sometimes rocking back and forth.
Tiffanie’s pediatrician, Dr. Sarah Grooms, determined that Tiffanie was developmentally delayed. The family was referred to Family Connection of South Carolina, a statewide nonprofit agency providing resources and guidance for parents, including those whose children have special health care needs or disabilities. Family Connection SC referred Tiffanie to the Greenwood Genetic Center, where, at age 2, Tiffanie was diagnosed with Rett syndrome.
The GGC, based in Greenwood since 1974, provides diagnostic testing and clinical genetics services, in addition to ongoing care for families affected by genetic disease, birth defects, and autism. Satellite clinics are in Greenville, Charleston, Florence, and Columbia. The GGC also conducts extensive research in the field of medical genetics, with the goal of developing both preventive and restorative therapies.
Stephanie, who had been working for the law firm McLaren & Lee, took time off to manage Tiffanie’s visits with nearly a dozen doctors, a physical therapist, and a social worker. She also returned to school at Midlands Technical College to study child care, in part to understand how Tiffanie compared with other children.
“I just wanted to know what was going on,” Stephanie says, “but I realized that there was nothing ‘going on’ with her because all children just need love. They need that nurturing, and that’s what she got. When Dr. Grooms told me she was delayed, it was like a punch in the gut. I felt lightheaded, and I had to sit down. I couldn’t believe it because I never smoked and I never did drugs.”
Despite her distress at Tiffanie’s diagnosis, Stephanie says she eventually reached a constructive conclusion: “It’s not the place we thought we were going, but it’s just as beautiful. My plans may have shifted, but my focus was still ‘how can I give her the quality of life she deserves?’”
When Tiffanie was in the hospital — as much as eight months per year — Stephanie would allow medical students to learn about Rett syndrome by visiting her. Few doctors and nurses knew much then about Rett syndrome apart from what they could read in medical journals and textbooks.
“The medical students would stand around the bed, and they would look, as the doctor would explain the repetitive hand movements, the rocking back and forth, the breathing, her not wanting to release air from her belly,” Stephanie says.
Toward the end of Tiffanie’s life, surgeons trying to alleviate her gastrointestinal distress would become discouraged by their lack of ability to cure her. Stephanie remembers talking to them like they were her children. “I would say, ‘I know you’re fighting for her. You’re just doctors, not gods. I don’t want y’all to feel like you didn’t do anything for her. I know you have done stuff for her. God has the last word. God gave you to me to use as a tool.’”
Tiffanie also had seizures, curvature of the spine, and the inability to walk or talk. Stephanie has met girls and women with Rett syndrome who were able to walk. Little is known about life expectancy with this rare disorder, but statistics indicate that almost all patients reach the age of 10 and some live well into adulthood.
By age 3, Tiffanie, who had to be carried everywhere, was fitted for a wheelchair. That did not faze her, Stephanie says, and she became a social butterfly, invited to spend time with many friends.
“She experienced everything, and that is why I’m so happy about her life,” Stephanie says. Tiffanie’s friends and cousins put her in swimming pools and on roller skating rinks, and she went on rides at Disney World.
Stephanie admits that her relationship with Tiffanie’s father suffered and they eventually parted ways, but, she says, “He loved Tiffanie, and she loved him. In the end, they looked alike, and they were buddies.” The extended Hayes family, along with the Gives family, joined Tiffanie’s teachers and friends from 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 quite a while for her to feel comfortable.
“I was confused,” Stephanie says. “I was mad. I had that ‘Why me?’ kind of thing going on. I just really needed some counseling and didn’t know it. That’s when Tiffanie’s teacher, Sherrie Burroughs, came in. While I was going back to school, she would take Tiffanie to Bible school and have me pick her up at church. I had stopped going to church. I was angry with God and having my own pity party.”
Stephanie’s parents encouraged her to go to work in the child care center at the Strom Thurmond Federal Building, even when Tiffanie was in the hospital. Her mother would remind her that her bills still needed to be paid.
Two blessings came out of Stephanie’s continuing to work. Child care turned out to be Stephanie’s niche, and spending time with her students was cathartic, giving her the energy that she needed to care for her own daughter. And, despite Stephanie’s refusal to start dating again, in 2008, friends at the federal building encouraged her to go out with Henry Winckler, who worked for Homeland Security. The couple has now been married for five years, and Stephanie enjoys being a stepmother to Henry’s grown sons.
Stephanie keeps Tiffanie’s memory alive through writing and illustrating children’s books. This year, she published her second book, Mommy and Me Under the Magnolia Tree, a mixed media illustration of Tiffanie’s childhood in Columbia. Her first book, The Best Girlfriends Ever, pays homage to all the women and girls who protected and uplifted Stephanie and Tiffanie in difficult times. Stephanie’s mission now is to bring people together to support one another and to help seek a cure for Rett syndrome. October is Rett Syndrome Awareness Month.
On Saturday, Oct. 16, at Sesquicentennial Park, Stephanie is hosting the second annual South Carolina Strollathon, an event spearheaded by the International Rett Syndrome Foundation. This past year, the event was virtual and raised nearly $7,000, and Stephanie points out that all the money raised is earmarked for South Carolina.
Everyone is welcome to participate. Registration at Sesquicentennial Park is at 9 a.m., and the stroll 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,” Stephanie says, “it’s going to the Greenwood Genetic Center.” While funding is used mostly for research, it also defrays other costs for children with Rett syndrome, like transportation to medical appointments. This year, Stephanie is particularly excited about having fellowship with other families affected by Rett syndrome. She wants to honor her daughter’s memory by sharing what she has learned.
“Don’t hide your children,” Stephanie tells parents of medically fragile kids, “because they know everything, and they sense everything that is going on around them — the sounds, the smells, the activities. They love it. Don’t keep them away from other people or be worried about what people are going to think or say. A lot of times people would come up to me and say, ‘What’s wrong with your baby?’ and I would say, ‘Nothing. What’s wrong with you?’ They would laugh and say, ‘Nothing.’ And I would say, ‘There’s nothing wrong with her. She’s just different.’”
Editor’s Note: To register or donate to the South Carolina Strollathon, go to Events.RettSyndrome.org/goto/StephanieGWinckler2021
Stephanie’s books can be purchased at TiffanieIsHope.org