05/23/2026
May 23, 2023 was the day we heard the words that changed our lives forever: Loic has PKAN.
Three years later, it’s hard to even put into words everything that has happened since that moment.
We started the Loving Loic Foundation. Together, we’ve raised over $2 million toward research and a potential treatment. We’ve hosted galas and golf tournaments. We’ve met incredible people—friends, strangers, families, doctors, supporters—who stepped into this fight beside us and never left.
At the same time, we’ve watched Loic lose so many of the abilities he once had. We have watched PKAN take pieces of him little by little. He’s undergone a DBS surgery. We’ve spent endless hours traveling, fundraising, advocating, researching, and trying to outrun a disease that never slows down.
The hardest part is that we still do not have a treatment or a cure yet.
If you would have asked me three years ago where we would be today, I would have told you Loic would already be cured. I truly believed we would move faster than this. Some days I wish time would slow down. Other days I wish research would speed up.
But we are still here and we are not stopping.
One thing that has come from all of this is a community that has carried us in ways I will never be able to fully explain. I constantly feel guilty that I cannot personally thank every single person the way they deserve. There are always so many moving pieces, so many balls in the air, and so much happening behind the scenes.
But please know this: we see you. We appreciate you. And we would not still be standing without all of you.
Whether you are family, close friends, people we’ve met along the way, or complete strangers who chose to care about our son—thank you for walking this road with us.
We still have a long way to go. But we’re going to keep fighting for Loic, for every PKAN child, and for the cure they deserve.
