My name is Federica De Majo. I am Italian, born in 1993, and I live in Utrecht, a lovely Dutch city, with my boyfriend Daniel, who is originally from Mexico. I work as a senior scientist and consultant for a biotech company.
In March 2025, we lost our first son, Tommaso, to a very severe form of Vein of Galen Malformation (VOGM). His loss was completely unexpected and came after seven months of an otherwise joyful and exciting pregnancy. As part of my grieving journey, I began looking for patient organisations where I could find some solace and support by connecting with other families going through similar experiences. However, in Europe, there is little to no representation for families of children with VOGM or other arteriovenous malformations (AVMs).
By connecting with Lex and CMTC-OVM, my goal is to help create a space where parents going through similar experiences can find reliable information, share their stories, and – most importantly – feel seen, understood, and supported.