Sealed with a kiss: how one little boy in Paris is stealing hearts in Costa Mesa

Although Léo Vauclare is just 3 years old, his kisses are known around the world.

A Franco-American living in Paris with his parents and little sister, Léo is the boy behind Bisous for Leo, a nonprofit organization named with the French word for “kisses.”

He loves swimming in the pool, listening to music and laughing. His big eyes light up behind a pair of large, round spectacles every he time he smiles — which is often.

But he has trouble eating. He can no longer hold himself upright without support.

When Léo was born, he developed like any other child — crawling, cruising and then finally taking his first steps. But his mother, Deborah Vauclare, said he never got past that. He would fall every few paces.

At about 15 months, Léo’s parents took him to the doctor, who assured them that some children take a few more months to learn how to walk.

But when the toddler continued to falter, his parents’ worries grew. Extensive testing and therapy followed. Then they pursued genetic testing.

The results showed their son had Infantile Neuroaxonal Dystrophy — or INAD, an extremely rare neurodegenerative disease that robs children of their fledgling abilities. It can weaken their muscles, taking away their ability to walk, hold up their own heads or control their eye movements, according to the INADcure Foundation.

Vauclare called the disease a mixture of Alzheimer’s and Parkinson’s that impacts children.

The Vauclares had just received the devastating news last June when their close family friend, Emily Rogath Steckler, visited Paris with her daughter, Chloe.

The Stecklers had scarcely arrived at the Vauclares’ apartment when the two little friends perched together on the windowsill.

Chloe planted a kiss on Léo.

And from there, the nonprofit organization was born.

“I literally couldn’t get it out of my head,” said Steckler, who co-founded Bisous for Léo with Vauclare. “I just knew everybody needed to be embraced and to have the kiss.”

Bisous for Léo has since raised more than $200,000 for gene therapy research at Washington University in St. Louis, Vauclare said.

The organization funnels funds through the INADcure Foundation to researchers addressing INAD and similar diseases. The organization’s Facebook page collects posts tagged with kisses and stories from other children with INAD worldwide.

Recently, the group collaborated nationwide with Martin Lawrence Galleries, which is owned by Steckler’s parents, David and Leslee Rogath. A portion of sales from reprints of artist Robert Deyber‘s piece, “Seal with a Kiss,” will benefit Bisous for Léo.

Deyber is known for his artistic plays on literal phrases. His works include “Love Sick,” depicting a polar bear spewing hearts out of its mouth, and “The Right to Arm Bears” showing a polar bear standing beside a cannon.

“Seal with a Kiss,” a painting of a proud pinniped with a big red kiss on its cheek preening atop a rock, was the perfect fit for Bisous for Léo.

“I think it may have popped up in a conversation or something. ... It will hit me, and I’ll be like, ‘Oh my God, seal!’” Deyber said with a laugh. “It’s gotten to be where it’s taken over my life at this point.”

Funds from the lithograph sales will support research on gene therapy and treatment taking place in the United States and Europe, Vauclare said.

The challenge, Vauclare added, is to convince researchers studying Alzheimer’s and Parkinson’s to pay attention to INAD — a disease that Vauclare said impacts only about 150 children worldwide.

Vauclare recently resigned from her job at an architectural firm so she can spend more time working on the nonprofit and supporting her son.

“The second my kids go to bed at night, I’m on the computer basically until my eyes shut, every single night,” she said.

Léo, now 3, is participating in a clinical trial that will last until June. Despite trips between the United States and Paris for treatments, Vauclare said her son remains cheerful.

“I definitely think as the disease progresses, we see a little bit less,” she said. “But even though we see less of it, it’s very pleasant in the morning when he wakes up and gives you a big smile. It takes him longer to connect with you.”

With every social media post and painting sold, the Vauclare family hopes to kiss the disease goodbye.

Donations can be made at BisousForLeo.org and lithographs may be purchased at martinlawrence.com/pages/every-kiss-counts.

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