When Life Gave Them a Cleft, Ella and Her Family Made Lemonade

Kelli Pastorelli is no ultrasound expert, but she had done this twice before and knew enough to know that her baby-to-be’s mouth was not supposed to look like that at 20 weeks. By the time the technician told her the baby would have a cleft, the hard truth of it had already begun to sink in.

She had her husband, Jimmy, had never met anyone with a cleft before, had no family history of it, knew little other than what the technician was now describing as a “worst-case scenario”: Their child might need more than a dozen surgeries before she turns 18… assuming she’s able to gain enough weight to undergo surgery at the earliest possible time, since babies with cleft palates often need special equipment even to be able to eat. In between surgeries, she might need years of speech therapy, specialized orthodontics, dental work, and more.

The couple ran home to research and otherwise prepare themselves and their family for the journey ahead. On the advice of friends, the Long Island family began their search for a cleft team with a visit to Dr. Court Cutting, a professor of plastic surgery at New York University Medical Center. He sat them down and told them the truth: “Everything is going to be okay.”

“He was very comforting,” Kelli remembers. “I trusted him 100% and felt like we were in the best hands.”

Kelli calls the day Ella was born “the best day” because her daughter was healthy and perfect and because the “worst-case scenario” had been avoided. Ella’s palate did not have a cleft, only her lip. She, thankfully, did not struggle to feed and the doctors said she would need only one surgery, when she turned four months old.

When the day for her surgery came, Kelli had become so accustomed to Ella’s cleft that she hardly noticed it anymore. On their way to the hospital, she asked Jimmy if all this was really even necessary.

She was nervous. No amount of trust can make handing your newborn over to another easy, especially when you know he is going to put her to sleep and change her. But Kelli mustered all her strength and did it. A few hours later, she hardly recognized that little face she had fallen helplessly in love with at first sight.

Only when she heard her cry did she accept that it was still her Ella.

Somewhere amid all the emotions of that moment, Kelli and Jimmy felt deeply fortunate that they could provide their daughter with the care she needed when she needed it.

As Kelli says, “Ella’s surgery opened my eyes to other people’s suffering. We wanted to show our gratitude for the life we lead and how we were able to help her.”

They spoke to Dr. Cutting about ways to give back to others with clefts, and he told them about Smile Train, where he is currently Chair Emeritus of the Medical Advisory Board.

Again, the family did their homework. And again, nothing would be the same.

The Most Magical Street on Long Island

Ella hosted her first lemonade stand for Smile Train when she was still just a toddler. It was inconspicuous enough — Kelli remembers it as just Ella and her siblings standing in front of their home behind a pack n’ play and a table — but the family spread the word and friends and neighbors came out, refreshed themselves on a hot day, and learned how their support would fuel Smile Train’s unique, sustainable model for helping children smile and thrive across five continents. It made them want a second cup, and a third.

So the Pastorellis served it up. Over the next few years, Ella ran the lemonade stand next to a bouncy castle, food sales, and other activities. Soon, calling the annual event “a lemonade stand” got to be like calling Disney World a taco truck: For one magical day each summer, Ella’s street transformed into a carnival, with music, food, drinks, games, and a little lemonade stand, all for smiles. Relatives and neighbors called Kelli each spring asking when the Lemonade Stand would go up so they could plan their vacations around it.

For Ella, though she still needed to visit her cleft team each year for dental and orthodontic check-ups, growing up with a cleft has mostly meant a special obligation to find ever more creative ways to make people smile at home and around the world each summer.

“You see how much each year has impacted children, so every year, you just want to beat that number to keep helping more and more children,” she said.

The Keys to the Castle

When Ella turned 10, the Pastorellis went even bigger. With sponsorship from a host of local companies, they threw her a gala that the community talked about for years afterward — and gave a lifetime of healthy smiles to hundreds more children around the world.

For all its success, the gala was also a lot of work, so they decided to go back to the classic Lemonade Stand for the years following. But when Ella turned 16, they knew they had to go for it, even bigger this time, because going big is what they do.

So on October 20, 2023, the Pastorellis invited more than 250 friends and neighbors to fill the historic Oheka Castle Ballroom for the sweetest sweet 16 Suffolk County had ever seen.

Like the Lemonade Stand itself, the gala succeeded beyond the family’s wildest dreams. By the end of the night, the Pastorellis had raised more than $130,000 for Smile Train, ballooning their 16-year total to more than $475,000 for helping bring life, joy, and smiles to other children with clefts around the world.

But sweet as it was, the night also contained a note of bittersweetness. At the height of the festivities, Jimmy and Kelli announced that this would be their last Smile Train fundraiser.

They were now handing the keys over to Ella.

The Secret Ingredient of Ella’s Lemonade

Sixteen years after Kelli and Jimmy looked at that sonogram that sent them worrying about their ability to raise a child with a cleft, the results are clear.

Ella eagerly accepted her parents’ charge to take on the responsibility and is driven to make this event her own, even if she doesn’t yet know what that will look like. “I know that I don’t want this to be my past. I will certainly continue this into the future.”

“My cleft has taught me not to take things for granted because people definitely have suffered more than I have from this,” Ella said. “I just want to take something in my life and change it for the better and help other kids do the same. It’s important to send the message your cleft should never define you and who you are.”