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!
Hi there! |
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.
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 (doppelganger) who lives on the other side of the world. We were born with the same rare benign tumor in our face and both have blond hair and blue eyes. It’s incredible to meet a cute mini version of myself. Read more about our meeting.
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.
One month ago I shared my story about getting diagnosed after 22 years of searching. At the end of my post I mentioned I’m in a Facebook group with people who have the same condition.