From Lauren Flickinger, Olive’s mom:

For 3 years, I’ve carried the weight of being the only family in the US I could find who has navigating a Lunapark Syndrome (LNPK) diagnosis. I started RareOlive from a place of isolation but determination — pouring my heard into learning, funding research and advocacy to kickstart a treatment where there was none. We have made incredible strides with our ongoing LNPK gene therapy efficacy study at UTSW.

Through this journey, I’ve been able to connect with 3 incredible LNPK families across the globe whose stories have fueled me. I’ve constantly reminded myself that there will be other families in the US. I knew we weren’t alone here.

While waiting, I have also been fortunate to make incredible connections with rare moms in the US who have brazenly committed to pushing forward research in their own communities, and who have helped me along this journey. You know who you are.

This week, everything changed for me.

On Tuesday, a mom in Ohio found RareOlive after receiving her daughter’s genetic testing results. Her beautiful little girl has Lunapark syndrome. She’s just a few states away, within driving distance.

I can’t fully express what it means to no longer be alone in this country. To know there’s another mom who has been on this journey, too. Who understands the sleepless nights, countless appointments, and so many other similarities between our daughters that it actually blows my mind. Our girls are SO alike. This mom has an older typical daughter too, just like us. Our families will meet in July!

I was able to help her prepare a bit for her upcoming genetics appointment, and she used the infographic I made for LNPK to update her friends and family on their long awaited diagnosis. She told me that she felt less alone and that it was a wonderful thing to have research and information at her fingertips. I am so full.

This is why we do what we do. This is why every dollar raised, post shared, research connection made matters so much. Rare doesn’t mean alone anymore. When we find each other, we become a force.

To our new Lunapark family — welcome home. You are not alone, and together… we’re going to change everything for our girls. Let’s go!

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