At a recent gathering of friends and family, Lilly Opinsky celebrated her 25th birthday with a barbecue in her parents’ backyard.
“We have learned over the years to try to enjoy and appreciate each day, and really be grateful for the small moments too,” said Lilly’s mother, Joyce Opinsky.
Lilly’s 25th birthday was a celebration few could have envisioned when she was diagnosed with Rett syndrome at age 2. Despite the severe limitations imposed by her condition, Lilly’s journey has been marked by resilience and love, with her family dedicated to giving her the fullest life possible.
“Lilly’s strength continues to amaze us,” Opinsky added. “Even though she faces significant challenges, every small moment becomes a reason to celebrate.”
Combating Rett syndrome
Motivated by their daughter’s diagnosis, Joyce and Larry Opinsky launched the first St. Louis Strollathon in 2008 to raise awareness and funds for Rett syndrome, a rare genetic neurological disorder. Once thought to primarily affect girls, Rett syndrome is now known to impact boys as well, though more rarely. The condition typically appears between six and 18 months of age, with early signs including the loss of speech, purposeful hand movements, and severe physical and cognitive impairments. Thanks to improved diagnostics, children are now being diagnosed at younger ages.
“At that first event, we had about 15 local girls and women with Rett syndrome participate,” Opinsky recalled. “This year, we expect about 35 participants, including boys and men with Rett syndrome, which reflects just how much has been learned about the disorder over the past 17 years.”
Advances in Rett syndrome research
Since Lilly’s birth 25 years ago, Rett syndrome research has made remarkable strides.
“Coincidentally, the cause of Rett syndrome was discovered the year Lilly was born,” said Opinsky. “Since then, researchers have reversed the disorder in mice, and just this year, two human gene therapy trials launched to explore a potential cure.”
These breakthroughs have renewed the Opinsky family’s hope. The establishment of the St. Louis Rett Syndrome Clinic at Children’s Hospital/Washington University in 2015 has also been transformative.
“Families travel from across the U.S. and beyond to meet this exceptional team,” Opinsky said. “The clinic staff even joins the Strollathon, creating connections that truly support Rett families.”
A family’s legacy of support
Through the years, a major supporter of the effort has always been Joyce Opinsky’s mother, Sandy Sher.
“She started ‘Necklaces for Rett’ nearly 15 years ago with her friend Phylis Kahn, and together they’ve raised over $32,500 for Rett syndrome research.”
Sandy’s handmade necklaces, a fixture at local craft fairs, will be available at this year’s Strollathon too. “That’s over 2,000 necklaces!” Opinsky added proudly. “You’ll never see my mom without one—and she’ll be there, as always, selling them at the Strollathon.”
Get involved
The St. Louis Strollathon is set for Saturday, Oct. 19 at the St. Louis Jewish Community Center (The J) and free and open to the public. Registration begins at 1 p.m., with the walk starting at 2 p.m. Donations are encouraged, with all proceeds supporting the International Rett Syndrome Foundation’s mission to empower families and accelerate research. For more information, visit www.st-louis.strollathon.org or call (314) 346-1323.
