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Wilma and Jaycee with Facial Infiltrating Lipomatosis, a PIK3ca Related Overgrowth condition - PROS syndrome, in San Diego

Meeting Jaycee (8) in San Diego – with Vela!

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Meet Jaycee (8) from Nampa, Idaho. Jaycee and I were born with the same rare condition. She is as happy and sweet as she looks like! 🥰 Jaycee’s family lives in San Diego and last September, when I visited Vela, we happened to be there at the exact same time. Of course we had to meet!

Meeting with Jaycee who has Facial Infiltrating Lipomatosis in San Diego

Meeting with Jaycee and Vela

September 2019 I was visiting Vela for 2 weeks who lives on an island next to San Diego. It was during this time that Jaycee was visiting family in San Diego. On Tuesday September 24, Jaycee, her brother, parents and grandparents came to visit and we had a delicious BBQ together. The next day we took a long walk on Coronado beach.

Meeting with Jaycee who has Facial Infiltrating Lipomatosis in San Diego

Bbq with Jaycee’s family

Because I had forgotten to record an important video, I visited them again later that week. And again we had a delicious BBQ with Jaycee’s family that day. Jaycee is a super cheerful girl who smiles a lot and is above all very happy and grateful. I loved meeting Jaycee and Vela and I hope we have many more meetings in San Diego in the future!

New extended family thanks to our photo

Thanks to the photo below we have found new extended family. Or well, they found us. The photo was picked up and shared by major news channels and went viral-ish. Eva from Australia and Virginia from Germany both didn’t have a diagnosis, but saw the photo and sent me a message. And here we are now! Amazing how life changing events like this can happen thanks to the internet and social media.

I'm Wilma (26) and I was born with a benign tumor in my face. For 22 years I did not know what it was. In 2017 I did a second opinion and got diagnosed with Facial Infiltrating Lipomatosis; an ultra rare condition with only a few people affected world wide. On my blog I share updates about my life and take you with me on my journey to meet extended family around the globe.