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Meeting Josie (10) in Kansas City

Meeting Josie who has the same rare condition

Hi all,

In my previous blog post I mentioned that I met people with the same rare 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. Here you can find pictures and a video of our day together.

When I got diagnosed one year ago, I immediately started searching for other people with the same rare 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 with a very special gift: an engraved friendship necklace with a very special, beautiFIL 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 at Sea Life in Kansas City

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, hopefully very soon!

> Click here for the Joyful Josie Shawl, a free crochet pattern inspired by dear Josie.

A short video about our day together


  1. You and Josie are beautiful. Thanks for all the patterns and especially for all the love. You are an inspiration. I am 66 years old tomorrow. I have had my share of sickness. I have gastroparesis and until about 5 years ago was in a hospital bed. After bladder reconstruction and going to Vanderbilt along with many other hospitals, I finally received a very unsure treatment. It was a trial. At Vanderbilt Hospital in Nashville, TN, I got a Vegas Nerve Stimulator on my stomach, so I am living on a battery. I have been walking for about four years and I have taken up crochet again, usually for gifts. Everything I make from your patterns are loved by the ones who get them and that makes me feel happy. I will make the beautiful vest forme sometime when I get the Scarfie yarn. Love and best wishes to keep making patterns for all.

  2. What a beautiful shawl and story. My mother’s name is Josie and is 97. I will have to crochet the shawl and tell her the story. God bless you and the young girl named Josie. I also live in the KC area.

    1. Thank you so much for your message. What a beautiful age she has! Funny how many similarities there are here 🙂 I liked KC City! Really appreciate your lovely words.

  3. I wish I had known you were in Kansas City! My daughter, Amber, and I would have invited you to our group get together with the KC Hook Society. We have a group that meets at a coffee shop for knitting and crocheting. Everyone would have loved meeting you!

  4. Hey Wilma,
    Wat is het filmpje leuk geworden! Ziet er uit als een hele leuke dag Vind het heel knap hoe je er zo positief mee omgaat allemaal, kan me goed voorstellen dat het ook knap lastig kan zijn! Fijn ook dat je het nu zo kan delen met je nieuwe familie, en wat een mooi cadeau ❤️ Liefs, Laura (cosyup)

    1. What part of KC do you meet? I live in this area too! Wilma, maybe you come back to KC in December and meet with us all at one of the Fritz’?

  5. Hey Wilma,
    Wat een mooi verhaal, en je filmpje is echt leuk. Wat ontzettend gaaf dat je je nieuwe familie ontmoet. Heel gaaf.
    Fijne zondag.

    Lieve groetjes,

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