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.Β 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!

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

A short video about our day together

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11 Comments

  • Reply
    Charlene
    14 September 2018 at 6:05 am

    Wilma, you are a joy to know through your posts. I will be buying your patterns.
    Most sincerely,
    Charlene Sargent
    charsarg@outlook.com

  • Reply
    Judith Strausbaugh
    24 May 2018 at 5:42 am

    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.

    • Reply
      Wilma
      26 May 2018 at 10:28 pm

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

  • Reply
    Catherine Holman
    12 May 2018 at 12:42 am

    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!

  • Reply
    Laura
    30 April 2018 at 8:38 pm

    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)

    • Reply
      Wilma
      1 May 2018 at 1:04 pm

      Bedankt voor je lieve berichtje Laura! <3

  • Reply
    Brigit (Gittepetit)
    29 April 2018 at 9:47 pm

    Wat een leuk filmpje Wilma. Wat fijn dat jullie het zo leuk hadden.

    • Reply
      Wilma
      1 May 2018 at 1:05 pm

      Bedankt voor je lieve woorden Brigit! πŸ™‚

  • Reply
    Emily
    29 April 2018 at 2:54 pm

    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,
    Emily
    (casacreaemilia.blogspot.nl)

    • Reply
      Wilma
      29 April 2018 at 5:37 pm

      Dankje voor je lieve berichtje Emily <3

  • Reply
    Joyful Josie Shawl - a round crochet shawl by Wilmade
    28 April 2018 at 10:46 pm

    […] lives in Iowa with her parents, twin brother and younger sister. I was fortune enough to get to meet Josie three weeks ago in Kansas […]

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