Although Lo 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, Lo 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 Lo 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, Los 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 Alzheimers and Parkinsons that impacts children.

Antoine, Deborah and Lo Vauclare are the family behind Bisous for Lo, a nonprofit organization that raises funds for research on INAD, a neurodegenerative disease that affects Lo.

(Courtesy of Deborah Vauclare)

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 Lo.

And from there, the nonprofit organization was born.

I literally couldnt get it out of my head, said Steckler, who co-founded Bisous for Lo with Vauclare. I just knew everybody needed to be embraced and to have the kiss.

Bisous for Lo 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 organizations 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 Stecklers parents, David and Leslee Rogath. A portion of sales from reprints of artist Robert Deybers piece, Seal with a Kiss, will benefit Bisous for Lo.

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 Lo.

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

Funds from the lithograph sales of artist Robert Deybers piece Seal with a Kiss will be donated to the nonprofti organization Bisous for Lo.

(Courtesy of the Martin Lawrence Galleries)

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 Alzheimers and Parkinsons 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, Im on the computer basically until my eyes shut, every single night, she said.

Lo, 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, its 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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