Parents have high hopes and dreams for their children. They think about them long before the kids even appear. So what happens when those dreams are shattered by a diagnosis of a unique neurodevelopmental disorder that will require maximum assistance with every aspect of the child’s daily living for the rest of her shortened life?

“It is very hard to go through, especially as a young family,” Larry Opinsky, father of eight-year-old Lilly who has Rett Syndrome, said. “When you get that diagnosis it’s really not what you want to hear.”

For the first year of Lilly’s life everything seemed was fine. But at around the one-year mark she was missing some developmental milestones. “For the next several months we did testing. When she was 18 months old we decided to take it to the next level and consult with a geneticist,” Larry said. “Right before she turned two we got the results.” Larry and his wife Joyce, members of Congregation B’nai Amoona, were naturally devastated.

Rett Syndrome is caused by a genetic mutation that is seen almost exclusively in females. And while the number of babies who are diagnosed with Rett Syndrome is one out of 10,000 to 23,000 live female births, the prognosis for a child with the disorder is not a happy one. Rett Syndrome affects areas of the brain that are responsible for cognitive, sensory, emotional, motor and autonomic functions. So a girl with this disorder may have problems with breathing, cardiac function, digestion, learning, speech, movement, and even chewing and swallowing. Lilly is non-verbal, her hands are non-functional and she has oral motor issues.

There are four phases of the disorder that begin with an early onset stage and then move to the rapid destructive (regressive) stage followed by a plateau phase where she doesn’t lose any further abilities but also doesn’t gain any. Finally, she enters the late motor deterioration stage. In this last phase, she will start to digress like someone who is aging. The average life expectancy of a girl may exceed 47 years, however between the ages of 25-40 the survival rate is only 69%. Fifty percent of the girls can’t walk; Lilly is in that group.

While the Opinskys have been dealt a life-altering blow, they haven’t taken it sitting down. They have both become advocates for the disabled and are active with the Rett Syndrome local community. In fact, they are chairing the inaugural St. Louis Rett Syndrome Strollathon in Tilles Park, May 3. “Our goals are to put on a fun event and raise money for research,” Joyce said. The money will go to the International Rett Syndrome Foundation for research, family support, and awareness and advocacy. There is no charge to walk or stroll the one-mile path nor do you need to pre-register. If you raise $100, through donations or pledges, you will receive a T-shirt; if you raise $500 you get a cap. Barbara Bindler, who is a long-time family friend, has a personal goal to raise $1,000 through her own letter campaign.

“Lilly is a love,” Bindler said. “When you talk with her she opens up those big wide eyes. My granddaughter Cecelia Goldberg is in the same religious school class with Lilly at B’nai Amoona. Joyce has always had the feeling that when Cecelia goes up to Lilly to talk with her that Lilly is really feeling what Cecelia is sending her.” The Bindlers have been close friends with Larry’s parents, Barbara and Jerry Opinsky, for around 40 years.

In fact, the Opinskys are drawing on the support of many family members and friends. In particular, Joyce’s friends from her days in youth group, NFTY, are still in her life. “Being involved in youth group was the highlight of my high school years,” Joyce said. “Ann [Mayer Eisen] is still one of my closest friends and Karen [Sher] married my cousin.” These women are some of the same friends who organized the “You Take The Cake” fund raiser for another friend from youth group days, Marla Scissors.

In addition to raising money and awareness for Rett Syndrome, the Opinskys are also hoping to educate the community about people with disabilities. “It’s important for my daughter to understand that people of all abilities have a place in our community at every level,” Larry said. “They aren’t in the way and shouldn’t be warehoused (in an institution) because of social mor és, convenience or finances.” He is actively working to make the world accessible for all people. He’s on the board of Missouri Protection and Advocacy Services and through his work with the Parkway School District — he is president of the steering committee for Parkway Advisory Council for Children with Disabilities — he has undergone training through the Missouri Planning Council for Developmental Disabilities program to learn how to advocate and make policies for people with disabilities.

Joyce, who has been active in the youth inclusion committee at B’nai Amoona to make sure programs are accessible, is pleased to see other kids at religious school using wheelchairs. “It’s nice to walk down the hall and see that Lilly is not the only one in a wheelchair. B’nai Amoona has made this a priority and that has made us feel welcome.” She is also a member of sisterhood. Bindler, who is on the committee for the Strollathon, praised Joyce’s abilities. “Her organizational skills are fabulous. At the meeting we could tell right away the event was going to be fantastic.”

The Opinskys, along with Lilly’s younger brother Sam, hope several hundred people attend the Strollathon and have an ambitious goal of raising $75,000. Registration for the event begins at 9 a.m. at the Gloria Rodgers Shelter in Tilles Park and the stroll will begin at 10 a.m. “We purposely picked Tilles because there’s an accessible playground, accessible parking and restrooms. We want to see people in wheelchairs, scooters and walkers regardless of their disability,” Joyce said. There will be refreshments and entertainment.

For more information about Rett Syndrome or to donate online, visit www.rettsyndrome.org. For more information about the stroll, call 314-878-0868 or send an e-mail to [email protected].