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!
People with FIL found so far: 60 |
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.
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.
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.
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!
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.
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.
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 January 2019 and it is expected to be ready one year later.
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.
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.
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.
March 2017 I met Vela, my 3-year-old mini-me, who lives on the other side of the world. We were born with the same rare condition and both have blond hair and blue eyes. It’s incredible to meet a cute mini version of myself.