Growing up in New York, I always believed I was incredibly lucky. I loved my city, but after visiting Paris as a teenager, I dreamed of living there one day. That dream came true in 2010 when I won a design compeтιтion, moved to Paris, and met my future husband, Antoine. We married in 2014 and looked forward to building a beautiful life together.

In April 2016, our son Leo was born. He was a happy, healthy little boy who reached all the usual milestones—he learned to walk, talk, and explore the world like any other child. But shortly after he began walking, we noticed he kept falling. Specialists couldn’t explain why. Months of therapy and medical tests showed nothing unusual, yet something wasn’t right.

By the time Leo turned two, he had started losing the skills he had worked so hard to gain. His condition worsened quickly. While I was five months pregnant with our second child, doctors recommended genetic testing—the last unanswered question.

Two months later, our lives changed forever.

The doctors called us into the hospital and delivered news no parent is ever prepared to hear. Leo had Infantile Neuroaxonal Dystrophy (INAD), an ultra-rare neurodegenerative disease with only around 150 known cases worldwide.

There was no cure. No approved treatment.

Then came the words that shattered us:

“Leo will never walk, talk, or live a normal life.”

When I asked how long he might live, the answer was devastating—only five to ten years.

We also learned that INAD is an inherited recessive disorder, meaning both Antoine and I unknowingly carried the same genetic mutation. There was a 25% chance our unborn daughter could also be affected. The weeks waiting for her test results felt endless. Thankfully, she was not affected, but our relief could never erase the heartbreak of Leo’s diagnosis.

INAD is a rapidly progressive neurological disease that usually appears between six months and three years of age. Children slowly lose every skill they have learned—from walking and talking to swallowing, thinking, and communicating. Most do not survive beyond childhood.

Just hours after receiving Leo’s diagnosis, my best friend Emily arrived from California with her daughter. Little Chloe immediately walked over, sat beside Leo, and gently kissed him.

Emily quietly said, “If only a kiss could make this better.”

That simple moment inspired Bisous for Leo—French for “Kisses for Leo.” Together, we created a campaign to raise awareness and funding for INAD research through the INADcure Foundation.

In September 2018, we launched the @BisousForLeo Instagram campaign, encouraging people around the world to post a pH๏τo blowing a kiss to help “kiss INAD goodbye.” Thousands joined the movement, including celebrities and supporters from across the globe, helping shine a light on a disease most people had never heard of.

When Leo was first diagnosed, there were no clinical trials available. Just six months later, he became one of the first children to participate in an experimental treatment designed to slow the disease. While it isn’t a cure, it represents hope—and every new study brings researchers one step closer to better treatments and, one day, a cure.

Caring for Leo becomes more difficult as the disease progresses, but his courage continues to inspire us every single day. Along this journey, we have met extraordinary families facing the same heartbreaking reality, and together we continue fighting for a future where no child has to endure this devastating disease.

Because INAD is so rare, raising awareness is just as important as funding research. Every conversation, every shared story, and every act of kindness helps bring hope to families who desperately need it.

Our dream is bigger than saving Leo alone. Advances in treating rare childhood neurodegenerative diseases like INAD may also help unlock better treatments for more common conditions such as Parkinson’s and Alzheimer’s disease.

To everyone who has supported our family—thank you. Your compᴀssion gives us strength to keep fighting.

Together, we hope to one day kiss INAD goodbye. 💙

Source: Love What Matters