{"id":2148,"date":"2020-09-14T08:00:46","date_gmt":"2020-09-14T06:00:46","guid":{"rendered":"https:\/\/wilmawestenberg.nl\/?p=2148"},"modified":"2020-12-27T00:54:02","modified_gmt":"2020-12-26T23:54:02","slug":"meeting-virginia","status":"publish","type":"post","link":"https:\/\/wilmawestenberg.nl\/meeting-virginia\/?lang=en","title":{"rendered":"My meeting with Virginia (33) on German TV"},"content":{"rendered":"\n

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.<\/p>\n\n\n\n\n\n\n\n

No diagnosis for 33 years<\/h2>\n\n\n\n

Virginia didn\u2019t have a diagnosis, but when Instagram showed her my photo with Jaycee, she immediately knew it was the same condition. We chatted for a while and discussed all the rare similarities we have. Virginia has had more than 10 surgeries already. After our conversation, she immediately arranged a biopsy to officially confirm the PIK3ca mutation (which causes FIL). I’m so happy she finally got some answers after 33 years of not knowing anything.<\/p>\n\n\n\n

Extended family living nearby<\/h2>\n\n\n\n

Only a few weeks later I already got to visit her in Germany. Usually I have to fly to another continent, but Virginia lives near Hildesheim which is only a 3 hour drive from Osnabr\u00fcck where my parents live. Really nice to have ‘extended family’ living so nearby. As soon as corona is over, she will visit me in the Netherlands. \ud83e\udd17<\/p>\n\n\n\n

Our meeting on German TV<\/h2>\n\n\n\n

Our meeting was recorded by a camera crew from RTL DE. Something different than my usual photos and videos taken on my phone. \ud83d\ude09 After our item was broadcast on German TV, we found 5 new people with FIL. Crazy, right? The item was broadcast in September and you can read more here.<\/a><\/p>\n\n\n\n

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Dit bericht bekijken op Instagram<\/div><\/div>
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Een bericht gedeeld door Wilma – Free Crochet Patterns (@wilmawestenberg)<\/a><\/p><\/div><\/blockquote>