Ann Marie Scheidler

Ten years ago, Ben and Elizabeth O’Connor welcomed their first baby into the world—a little boy named Ryan.

“I had a pretty uneventful pregnancy, no testing that signaled any issues,” recalls O’Connor. “Our beautiful little boy was born on December 9, 2014. He passed all of his tests at the hospital, and they sent us on our way.”

But once at home, Ryan couldn’t eat. He cried all of the time because he was so hungry. The O’Connors didn’t sleep for days.

“We were literally feeding Ryan like a baby bird through a syringe,” O’Connor says. “After six weeks of this, they finally did a surgery to open up his airway that helped him eat, and things started to improve.”

But while they were relieved to overcome this hurdle, the O’Connors noticed that Ryan was still missing several developmental milestones.

“His delays were becoming more obvious, so we began early intervention,” she says. “Our physical therapist eventually recommended we see a neurologist. I remember being so offended because I thought Ryan was working so hard and making such great progress. But she was spot on. About a month after she suggested this, Ryan had his first seizure. Even after that, we thought it was just a febrile seizure, something that’s pretty common in children. But then he had a second one and a third one, and then an EEG test showed a brain wave pattern that was very typical of children with Angelman syndrome.”

Angelman syndrome (AS) is a rare neurogenetic disorder that is estimated to affect one in 15,000 people or approximately 500,000 individuals worldwide. People living with AS have a genetic difference on chromosome Ryan and others living with AS do not produce any or remotely enough of something called UBE3A—a protein involved in brain functioning that helps us walk, talk, and perform many other everyday tasks. Symptoms of AS include significant developmental delay, balance issues, motor impairments, debilitating seizures and disruptive sleep. Many with AS do not walk, and most cannot speak.

Ryan was officially diagnosed with Angelman syndrome on July 1, 2016.

“When the neurologist gave us the diagnosis, he told us that Ryan would likely never walk, never talk, or ever live an independent life,” O’Connor says. “And just like that our entire life changed in an instant. We were immediately flooded with all the things ‘Ryan would never do.’ But our family and friends embraced us wholeheartily and reminded us that they would be by our side as we walked this journey one day at a time.”

The O’Connors immediately sought support from the Angelman syndrome community and soon found an organization called FAST—the Foundation for Angelman Syndrome Therapeutics. FAST was started in 2008 by a group of passionate parents relentless in seeking therapeutics for their children living with AS. Sixteen years later, FAST has raised and invested over $50 million in Angelman syndrome research, has outlined a clear Roadmap to a Cure, and now has a paid staff of 16—including as of a year ago Elizabeth—who works as a fundraiser helping to raise critical funds in support of research to cure AS.

“I have been in fundraising my whole career,” O’Connor says. “But this job has been the most fulfilling of my life. Not only do I get to work in honor of Ryan every day, but I have also had the privilege of meeting so many inspiring AS families from around the world doing whatever they can to support FAST’s mission of curing AS.

“Dr. Art Beaudet, a longtime AS researcher responsible for identifying the single gene causing all the problems for individuals living with AS gave our community so much hope when he said, ‘Of all the childhood genetic neurologic disorders of the brain, AS may be the single best candidate for developing a definitive treatment.’ So, to be honest, my dream is to be out of a job as quickly as possible, because that would mean the mission has been accomplished.”

“FAST is proving that better days are possible for Ryan and all who live with AS,” O’Connor says. There are currently 20 therapeutics in the drug development pipeline for AS, 14 of which have been funded by FAST science grants, with four therapeutics currently in clinical trials—one of which is happening at RUSH (University Medical Center) in Chicago.

“A treatment for Angelman syndrome will have a tremendous impact on society at large. The gene that causes Angelman syndrome has been linked to several other diseases and genetic disorders involving learning and memory. The work FAST researchers are doing may be the gateway to life-changing therapies for other disorders, including more common neurological disorders like ALS and Alzheimer’s disease.”

“FAST has inspired us to dream big for Ryan and I’m grateful to be able to use my gifts and talents to ensure better days are coming for Ryan and all who live with Angelman syndrome.”

Ryan has two younger siblings, 7-year-old Patty and 3-year-old Jay.

“Ryan is always watching and learning from Patty and Jay—and they are constantly learning important lessons from Ryan too,” she says. “Patty and Jay are empathetic and compassionate. They have learned to be resilient, flexible and understanding of people’s differences, too. Our days rarely go as planned, but they have proven how capable they are to embracing the unpredictable and we are so grateful for that. Ever since Patty could talk, she would say, ‘This is my brother Ryan. He has Angelman syndrome. He can’t talk, but he understands you.’”

Ryan is turning 10 this month and is in third grade at Lake Bluff Elementary School.

“He’s in a general education classroom with a one-on-one aid,” O’Connor says. “They call him the mayor over there because he is always waving at everyone, and everyone knows him. The kids are really kind to him. I’m incredibly grateful to the team at LBES who recognize all of Ryan’s abilities and not just his disability. They respect his opinions, and honor his feelings, and know that just like other kids, Ryan is entitled to good days and bad ones. They, along with his entire team of therapists, are the MVPs of Team Ryan and we could not be more grateful for their goodness.”

O’Connor is so proud of how her family is navigating Ryan’s journey and beyond thankful for the family and friends who support them.

“Ben and I have learned that the grief around this diagnosis isn’t a linear path,” she says. “We’ll feel like ‘we’ve got this,’ and then something sets us back. We know Ryan challenges our entire family to be our best selves. Some days that task is harder than others. But our goal is to stay present and keep the faith. And being in this community, surrounded by so much kindness and support gives us the fuel to keep going. Ryan is known, loved and accepted here and we couldn’t ask for anything more.”

For more information about Angelman’s syndrome or to donate to further FAST’s ground-breaking research, visit cureangelman.org/donate.

Mary Greub may never have chosen to be the owner of Gerhard’s Elegant Desserts, but she is abundantly grateful that such a life chose her.

Mary, with her larger-than-life personality, can-do attitude, and knack for making everyone feel like she’s your friend is the woman behind the pastry shop that carriers her former husband’s name. Thirty years ago, she and Gerhard came to Lake Forest when they heard a pastry shop near Market Square was for sale.

“Gerhard was the executive pastry chef with the Four Seasons Chicago at the time,” Mary says. “He was helping them launch properties all over the world, but he was ready to move on. The couple selling the pastry shop had owned it for 20 years. And it had been a pastry shop for 40 years before them. When we first got here, we had big plans to blow out the walls and change things up, but we realized that this town likes things the way they are.”

For three decades (Gerhard’s Elegant Desserts celebrated its 30th anniversary in August), Gerhard’s has provided its customers with elegant desserts and pastry items made from scratch in the European style of fresh, natural, quality ingredients.

“Gerhard is and always has been a purist,” Mary says of the French Swiss flavor of her shop. “We don’t really change things. Gerhard wants things to remain how they originally were. We aren’t trendy. We stay true to how pastry is. The menu may have evolved over the years, but our commitment to quality ingredients and real flavors has stayed the same. That is wonderful for the business.”

Chef Sandy Sofere has been the pastry chef at Gerhard’s for the last 25 years, as the shop’s namesake now lives on the other side of the globe. Gerhard, however, does make regular visits back to the shop over the summer months and at Christmas. While their dark chocolate mousse cake remains an all-time best seller, Gerhard’s customers look forward to December when the custom gingerbread houses, bûche de noël, and signature chestnut dessert return for the holidays.

“There was a time when Gerhard was home and he saw some spinach pie and baklava in the cases and asked me what that was about,” Mary says with a laugh. “I had to remind him that I am Greek and every now and then some of my culture will be represented, too.”

Catherine Greub, Gerhard and Mary’s daughter, has never known a life without the shop. Now a consultant living in Nashville, she has many special memories of growing up at Gerhard’s.

“I’ve had bosses ask me before how I know so much about business,” she says. “It all makes sense when I tell them my parents had a small business. Even before I could work on the floor, I was helping—or playing—in the back. I wouldn’t trade those experiences for anything. I’ve known some of the employees my whole life.”

Mary manages a mighty team of 14 at Gerhard’s. She prides herself on having so many long-time employees.

“I know that people think I can be tough,” she says. “But our customers have come to expect a certain high standard from us, and I never want to disappoint them. One of my former employees who worked here when she was in high school now comes by the shop with her own little ones. She tells me that some day she wants them to work here and learn from the best. That means a lot to me.”

But it’s Mary’s customers who truly have her heart. She greets nearly every person who walks through her shop door by name.

“I’m so grateful to own a business in this town,” she says. “It’s such a beautiful town with such beautiful people—such kind and loving people. How did I end up being here? How did this happen to me? People ask me all of the time if I think about retiring. But this is my social life. I’m so happy to come to the shop. Gratitude doesn’t begin to express how truly blessed I feel.”

Gerhard’s Elegant Desserts is located at 720 N. Western Avenue, 1820 in Lake Forest. For more information, call 847-234-0023 or visit gerhardsdesserts.com.

Lauren Peters has always dreamed of owning a shop. A few years ago, the Lake Forest mother of three decided to get serious about it.

“When our girls were in a good place, school-wise, and owning a store seemed like a real possibility, my husband and I agreed that I go back into working retail to get a better understanding of the buying, selling and back-office processes,” she says. “So, I went to Lillie [Milovanovic] and asked if I could work with her because she does it all. She knows how every aspect of her business runs because she has perfected it over 30 years.”

Milovanovic came to Lake Forest in 1990 with the idea of opening a women’s clothing store. She bought the building that once housed Hansen’s Children’s Store and transformed the space into Lillie Alexander Ltd., a go-to fashion retailer for the North Shore’s most discerning shoppers.

At one time, Lillie Alexander was considered a signature store for Lilly Pulitzer, a rare distinction for a store located in a part of the country where there are more cold days than not. Over the years, she’s had her finger on the pulse of up-and-coming designers, being one of the first on the North Shore to offer Veronica Beard, Ulla Johnson, and Nili Lotan.

“I have so much admiration for Lillie,” Peters says. “To think that she came to Lake Forest 35 years ago, opened a store, and ran it as owneroperator that whole time—the instincts, guts, and the discipline—is truly impressive.”

When Peters first moved to Lake Forest as a newly married graduate student, she was looking for a part-time job in retail—even then, the allure of working in fashion was strong. Because her mother was a frequent customer of Ellen Stirling’s, Peters stopped by The Lake Forest Shop to see if they might hire her.

“I was so intimidated the first time I met Ellen,” Peters explains. “She asked me for my book, and I was like, my what? In those days, Ellen was looking for a salesperson who came in with a ‘book’ of clients. I was just starting out and didn’t have anything like that. But Ellen was very good to me. She told me to believe in the value of what I liked doing. She had a very kind and empowering tone and encouraged me to go and talk with Lillie.”

And that’s exactly what Peters did, which is where her story with Milovanovic begins.

“Working with Lillie was the best master class in retail I could take,” she says. “Long before I was serious about having my own store, Lillie taught me the importance of customer service. She said to always put the customer first, and she kept trying until she found something the customer liked. It made her so happy when she did!”

As Peters raised her three girls, she stayed close with Milovanovic— sometimes helping on the store floor when she could, and other times as a customer for her family and friends. Milovanovic was the natural choice for Peters to choose as a mentor when her husband encouraged her to get the experience she needed to someday successfully open a store of her own.

One Sunday afternoon, Peters was working at Lillie Alexander when Milovanovic stopped in unexpectedly on her day off.

“Lillie could tell I had been crying. My husband had just told me about the new job he had been offered that would move our family to Seattle. And Lillie said, ‘I thought you were going to take over my business someday’,” explains Peters, who recently signed papers for a partnership with Milovanovic that will ultimately put Peters at the helm of the boutique. “I’m not sure if that moment hadn’t happened if we would be where we are today.”

With Lillie now able to do the things she enjoys doing, Peters keeps the day-to-day operations running.

“Lillie’s clients can rest assured knowing that all of the things they love about Lillie Alexander will continue to be part of this special store,” she adds. Selling Lillie Alexander is not something Milovanovic has taken lightly or came easily.

“I love my customers and putting together looks that are perfect for them. I so enjoyed getting their photographs of how they wore something they purchased and hearing how many compliments they received,” says Milovanovic. “I also appreciate my close relationships with all of the brand reps. We worked together to pick the best items for our customers. I know Lauren will be successful if she continues to carry on this same philosophy. I know she will.”

Lillie Alexander Ltd. is located at 197 E Westminster Avenue in Lake Forest. for more information, call 847-295-8686.