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Bisous For Léo: The Power of A Kiss

by EMILY ROGATH STECKLER

In the summer of 2018, after a planned trip to Europe, I received a last-minute text message from my best friend, Deborah, telling me not to come to visit her in Paris. The text was filled with emotion while trying to explain that she and her husband, Antoine, had just received very upsetting news about their son Léo. I couldn’t conceive of what it could be, but as Deborah was 7 months pregnant and clearly upset, I wasn’t about to question it – especially via text. At the time I was dripping in ice cream in the middle of Hyde Park, with my then three-year-old daughter, Chloe. Within the hour Deborah called and she was hysterical while apologizing for telling me not to come. The pain in her voice was palpable. I told her no decision needed to be made quickly. I could extend my stay in London or come to Paris the following day. We ultimately agreed on the latter.

When we arrived at Deborah’s apartment, bags still in hand, Chloe went right over to Léo, embraced him and gave him a kiss. I don’t know how she knew but somehow instinctively she felt that a kiss is exactly what Léo needed…it was. We arrived in the afternoon and after the kids finished eating, Deborah and Antoine confided in what was going on. They said, Léo has something that we have never heard of, but it will eventually kill him, unless we find a cure. The disease is neurodegenerative, called Infantile Neuroaxonal Dystrophy (INAD) which is essentially a cross between Parkinson’s, Alzheimer’s, and Lewy Body Dementia. The digestible understanding is that the kids who have INAD share a gene mutation with some forms of Parkinson’s (PLA2G6) and have the same pathogenesis and neurofibrillary tangles as those affected by Alzheimer’s and Lewy Body Dementia. Children develop normally for about a year, hitting their developmental milestones, and then rapidly lose all acquired skill. Everything from walking to talking to eating to hearing to seeing (the list goes on), would become affected. I didn’t know what to make of such a diagnosis; neither did they. We sat in shocked silence, breaking it every so often to ask each other questions. There wasn’t much information out there. We scoured google and found one organization called The INAD Cure Foundation based out of New Jersey, not far from where Deborah grew up, along with government-type NIH info. That’s it.

I ended up staying the week in Paris. Deborah was rushed through genetic testing to see if her unborn daughter would also be affected with INAD (luckily she wasn’t). The disease is autosomal recessive meaning that both parents need to be carriers of the mutated gene in order to potentially pass it on to their children. Like the fruit fly experiments Deborah and I used to do in high school and college together, the kids have a 50% chance of a becoming a carrier like the parents, 25% of having nothing and a 25% chance of having INAD. We also learned that the children affected with INAD experience the same neurodegeneration as those with the adult versions of the aforementioned diseases without the same environmental factors at play (even those with early onset have experienced more life than these infants). I’m not one to answer why things happen, but I do know that these children are so important as the knowledge found from studying and testing on them can then be applied to the adults, which could potentially affect treatment and cure options for all. In other words, the kids are the purest form of these diseases that are affecting 50 million people worldwide.

Having a grandmother that passed away from Alzheimer’s with Lewy Body Dementia and understanding the importance of the kids affected with INAD, my wheels because began to turn, and by September 1, 2018, Bisous for Léo was live. Deborah and I were able to recruit the likes of Priyanka Chopra, Laura Dern, Sebastian Stan and so many others to post their kisses on social media and tag @BisousForLeo in order to raise awareness and funds for scientific research targeting treatment and cure development. All of the money raised would be funneled through the INAD Cure Foundation as our goals were in complete alignment. To date, Bisous For Léo has raised more than $250,000.

The power of a kiss is still needed, today more so now than ever. No matter how old you are or what your profession is, all eyes are currently on Corona and the sharpest minds are working on the cure. As we know all too well from INAD, that takes time and money – the latter of which will likely be provided by the government. INAD is not as fortunate in that regard. We are desperate for money to keep the trials and research going. We are praying that travel resumes at some point, so that Léo and the other children enrolled in the first ever clinical trial can continue their treatment, and we are hopeful that while people are sitting at home worrying about whether or not they will become sick with something, they remember the kids who are already sick with something else.

My hope is that people don’t lose focus of the other things that plagued the world before Corona, because if we do, they will continue to plague us long after the vaccine for Corona has been proven effective. I try to find the silver lining in all things and I’ve found two, thus far, as it relates to Léo and INAD:

I’m sure more silver linings will come, but only if we collectively, as a society, remember that Corona isn’t the only “it” that we need to focus on. Together, we can kiss INAD goodbye.

EMILY ROGATH STECKLER

Emily Rogath Steckler is the Co-founder of Bisous For Léo. She lives in LA with her husband and two kids, Dylan and Chloe.

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