6 Years Old | France
When Leo was 14 months, and started taking his first steps but would constantly fall, we were concerned. After speaking with several developmental specialists, nobody could find out what was wrong. After months of therapy and testing results all coming back normal, we even were more confused.
Leo was 2 years old when diagnosed with INAD. I was also 7 months pregnant with our second child. I’ll never forget the day the hospital called asking Antoine and I to come in to speak with the geneticist. Sitting in the waiting room for the doctors, I felt scared not knowing what to expect but never thinking the diagnosis would be so devastating.
They told us that INAD is a rare, neurodegenerative disease, with only 150 known cases worldwide, and no treatment or cure. They also explained that Leo will never walk, talk, nor live a normal life. We were shocked. We didn’t know what to ask.
The first thing I did ask was the life expectancy. 5-10 years. How could it be true? They explained that it’s a recessive disorder, meaning Antoine and I must both be carriers of the genetic mutation and therefore, a 25% chance that our daughter is affected as well. We had to wait another 2-3 weeks for her results. I couldn’t sleep, I couldn’t eat, and the nausea from my nerves took over. Finally, the results came back and our baby girl was ok! It was such a relief but not nearly enough for what we are about to face.
Leo never learned how to walk or talk. He can longer crawl, hold his head, or any body part up on his own. He can no longer eat or drink by his mouth, and now uses a feeding tube. He has difficulty controlling saliva and more frequently chokes on it. He could once see objects and people that were close, but now can only recognize them by the sound of their voice.
Leo just turned 6 and is slowly losing the ability even to smile. It becomes more and more difficult to lift him, bathe him, and get around. The list of medications increases as the disease progresses and his body deteriorates. He tires much more easily and the time we have with him is not only limited and limiting of the things we can do.
Long walks in the wind and sun, being in water, listening to music.
Life is too short, make every moment count and live it to the fullest!
Shortly after Leo’s diagnosis, my best friend and I created “Bisous for Leo” (Kisses for Leo in French), since Leo is half French. Our campaign helps to raise funds and awareness for INAD, through the INADcure Foundation.
In September 2018, Bisous For Léo launched an Instagram account @BisousForLeo encouraging its followers to help kiss INAD goodbye, not just for Léo but for all children affected by the disease. People from all around the world have been posting their kisses, some of which include; Nicky Hilton, Isla Fisher, Zoe Saldana, Josh Gad, Eva Longoria, Sebastian Stan, Chelsea Handler, Academy Award winner Sissy Spacek, Academy Award winner Casey Affleck, Academy Award winner Diablo Cody, Jamie Lynn Sigler and many others (with more to come…!)
We are incredibly grateful to everyone who has supported thus far. The Bisous for Leo campaign has grown beyond our wildest expectations, and we are hopeful that it will continue to grow. If you would like to help you can do so by donating at BisousForLeo.org and posting your kisses on Instagram in support and tag @BisousForLéo. Don’t forget to follow us too.
With everyone’s continued help, we can hopefully not only kiss INAD goodbye, but Parkinson’s and Alzheimer’s too. Together we can do this. We thank you so very much in advance for your support.