Meeting samuel in Madrid - Facial Infiltrating Lipomatosis, a PIK3ca Related Overgrowth condition - PROS syndrome

Meeting Samuel (5) in Madrid

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Saturday June 16th, 2018, I flew to Madrid to meet Samuel and his family. A special weekend because it was his birthday that Sunday! Of course I brought him presents from the Netherlands.

Samuel’s 5th birthday

On Sunday, June 17th, we celebrated Samuel’s birthday in a play paradise for kids. I met his lovely family: his grandparents, aunts, nephews and nieces who all love him very much. On Monday Samuel had to go to school, so I spent the day with his parents Leni and Jorge. They showed me Madrid and treated me on a great lunch. Leni loves to cook and she prepared a delicious healthy meal in the evening.

Samuel 5th birthday - meeting facial infiltrating lipomatosis
On our way to celebrate Samuel’s 5th birthday!

Highly intelligent

Samuel is one of the sweetest and smartest kids I know. He can solve cubes in a short time, write at a very young age and he already knew some English words that he had picked up from watching Netflix. He’s a huge fan of Pokémon and knows all the names by heart. Unfortunately, Samuel has a severe variant of FIL and has had to undergo many surgeries.

Meeting in the Netherlands

Samuel and his parents will soon visit me in the Netherlands. The plan is that Mille and her parents from Denmark will also come to the Netherlands in the same week, so we can spend a nice weekend together. Mille and Samuel are the same age and have the same personality: both very sweet, joyful and smart. I really want to make sure those two can meet and I am really looking forward to this group meeting 🤩

Meeting Samuel and Wilma in Madrid - facial infiltrating lipomatosis
Samuel with a lill’ dino in his hand which he was holding all day (one of my gifts) 😂

I'm Wilma (26) and I was born with a benign tumor in my face. For 22 years I did not know what it was. In 2017 I did a second opinion and got diagnosed with Facial Infiltrating Lipomatosis; an ultra rare condition with only a few people affected world wide. On my blog I share updates about my life and take you with me on my journey to meet extended family around the globe.