Interview on Dutch TV (Je Zal Het Maar Hebben)
March 2022 I was featured on a very popular tv show in the Netherlands. I talked about my rare condition, finding others and my crochet business. Here you can watch my item on YouTube.
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Interview on German TV
September 2020 an item was broadcast on German television about my life and meeting extended family. Thanks to this interview we found 5 new German FIL patients!
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My meeting with Virginia (33) on German TV
1 of the 2 special meetings in 2020 was with Virginia. We got in touch via Instagram this summer after she saw my photo with Jaycee. Our meeting got recorded by a camera crew and broadcast on German TV.
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Meeting Hailey (2) in New York with Koen & my parents
Monday January 20th 2020 I got to meet Hailey (2) and her family in New York. Hailey and I were born with the same rare condition and we have the exact same hair color. My parents were able to join which made it extra special.
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Meeting Jaycee (8) in San Diego – with Vela!
Meet Jaycee (8) from Nampa, Idaho. She is as happy and sweet as she looks like. Last September I visited Vela and we happened to be in San Diego at the exact same moment. We came together at Vela’s house and had a great bbq together.
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A meeting that was meant to be: Mateus (23) from Sao Paulo
I wanted to share something crazy that happened this week. A few hours before I flew back to Europe, I received a message from Mateus (23) who has FIL too! And guess what.. he lives in Sau Paulo! He messaged me at 1pm.. and 5pm we were sitting together at Mc Donald’s!
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Interview On Dutch TV: ‘You Cant Ask That’
Last March I was on national television in a program called You Can’t Ask That. I was invited to talk about living with a facial difference and answered many questions people might have.
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We got married in Las Vegas
November 30th was our big day: Koen and I got married in Las Vegas! Everything went as planned and the weather was great. We were surrounded by our parents, sisters and extended family from San Diego.
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We bought a house!
Koen and I bought our very first house! We’ll stay in the same area as where we live now, which is close to Koen’s work. We both preferred a newly built house and fortunately for us there’s plenty of choice here as they’re building many new residential areas. They will start building our house in…
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Meeting Janneke (23) in the Netherlands
I don’t know where to start with one of my most bizarre stories ever. Thanks to YouTube’s algorithm I found Janneke (23) who has FIL. And the craziest part? We only live 10 km (6 miles) apart.
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Meeting Samuel (5) in Madrid
Saturday June 16th, 2018, I flew to Madrid to meet Samuel and his family. A special weekend because it was Samuel’s birthday on Sunday! Of course I brought him presents from the Netherlands.
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Unexpected good news: a new medicine shows good results
Thursday was a special day for me and all the people (and their families) that suffer from an overgrowth syndrome caused by the PIK3CA gene. A new medicine has been tested on patients with a similar condition and show very promising results.
