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wilma and mini-me vela - fil - facial infiltrating lipomatosis

Meeting Vela, my 3 year old mini-me with the same rare condition

Last month I met Vela, my 3-year-old mini-me who lives on the other side of the world. I was always intrigued by stories about people who randomly ran into someone who looks identical, the so-called ‘doppelganger’.

Folk wisdom has it that everyone has at least one doppelganger somewhere out there in the world that is a perfect duplicate of you. Very interesting to read about, but I always knew this wouldn’t apply to me. Impossible.

Vela, a mini version of me

Vela is one of the 20 people with the same rare conditition I have found so far. In general all 20 of us look a lot like each other as we have the same unique facial characteristics.

Vela also has blond hair and blue eyes like I have. And maybe the most funny part: she has the exact same character and temper as I had at that age! Literally a mini-me!

3 vs 23 - wilma and vela - fil - facial infiltrating lipomatosis

3 vs 23

The meeting

Koen and I were invited by Vela’s mom, Stephanie, to come over. We added San Diego to our big train trip last month. We traveled all the way from Wasthington DC to Los Angeles by train where we got picked up by Vela and Stephanie. Below a short summary of our days together. I will keep it short, it’s more fun to watch the video anyway! :)

Day 1: Coronado
Vela greeted us with a big hug. We brought some Dutch snacks from Holland, including Stroopwafels. She loved it! It was a 2-hour drive from LA to their house at Coronado, a small island next to San Diego.

We stopped for pizza, ice cream and a walk to the beach. That evening they made us a delicious pasta and Vela showed us her awesome dance moves.

Day 2: San Diego
The second day, Friday, Koen and I took the boat from the island to San Diego where we spent some time together. After that, Stephanie’s mom invited us for lunch. Vela wasn’t there because she went to kindergarten.

That same evening we were invited by Willem’s friend for a trip on his boat. We sailed from the island to San Diego and back.

Day 3: Build-A-Bear
Saturday, our last day, Stephanie and Willem took us to Hotel Del, a popular hotel on the island with a great breakfast buffet. At noon we went to the Colorado Yacht Club for some fun Easter activities with Willem’s parents. Willem’s dad is actually Dutch too!

That evening we went to San Diego to get Vela’s birthday gift: a toy from Build-A-Bear. A fun experience where you can ‘make’ your own stuffed toy, even including a birth certificate!

<3

I loved spending time with Vela and her family. I saw so many similarities, it’s unbelievable how much she reminds me of myself. Vela and her family are now a big part of our lives and I look forward to our next meetings!

I am Wilma (23) and I was born with a rare tumor in my cheek. For more than 22 years I did not have a diagnosis. Thanks to my website visitors I ended up at the Hecovan working group where I did a second opinion in 2017. Here I got diagnosed with Facial Infiltrating Lipomatosis (FIL); an ultra rare condition with only a few people affected worldwide. On my blog I share updates and take you with me on my travel adventures around the world to meet my 'extended family' with the same condition.

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