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Meeting Josie (10) in Kansas City

Wilma Westenberg and Josie who both have the rare condition FIL got to meet

Hi all,

In my previous blog post I mentioned that I met people with the same condition. The last two months I have met five people while staying in the USA. One of them was Josie, a 10 year old FIL-sister from Iowa.

When I got diagnosed one year ago, I immediately started searching for other people with the same condition. I was lucky enough to find Josie’s website, made and written by her mother Erin, on which she shared updates about Josie’s surgeries and progress. We got in touch via Facebook and Erin added me to a group with three other mothers.¬†Never would I have imagined that I would meet Josie and Erin only one year later.

About Josie
Josie has a twin brother, Brooks, and a younger sister Millie. Josie and I have a lot in common. Besides looking a lot like each other, we have similar hair colors and we wear the same kind of glasses. And the most interesting similarity: we are/were both competition swimmers!

Josie has already conquered a lot in her youth regarding treatments. She has been seeing an American doctor since she was four. She has had many surgeries focused on removing the tumor and facial reanimation process, which is the process of surgically correcting facial paralysis. In total she has now undergone 10 surgeries and there will be some more in the coming years. Despite the fear and pain she and her family had to go through, Josie has always been brave and courageous. Very special for someone of such a young age and something I really admire.

Our meeting
Sunday March 25th we started the day at the Airbnb apartment Koen and I were staying. Josie, Erin and Brooks picked us up. After the needed hugs it was time for presents. I brought a bag with typical Dutch candy for them to try. Josie and Erin surprised me a very special gift: an engraved friendship necklace with a very special, beautiful text. Josie also gave me her official Josie’s Tribe shirt with which they raise money for surgeries and travel expenses.

The necklace Josie and Erin gave me. Such beautiful text! It was made by Erin’s friend.
BeyoutiFIL necklace Erin gave me

First we visited Sea Life where we enjoyed the little – and not so little – fishies. After that we took the free (yes, free!) tram to another part of Kansas City. We walked through an indoor market and ended up in the most crazy candy shop I’ve ever seen. They sold lollipops with real insects for example! Eeks! We ended the day at an awesome train restaurant where food gets delivered by train. So fun!

Group picture at Sea Life

Group picture with Josie, Erin, Brooks and Koen at Sea Life

It was a very special, emotional day and it was hard to say goodbye at the end of the day. I’m looking forward to the day we will meet again which will happen for sure!

A short video about our day together

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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