Stīngaciu family (Romania): Exchanging experiences and smiles

We are Marius, Dănuț and Lili Stīngaciu, a family whose 15-year old son is living with severe haemophilia A.

As part of our haemophilia community we travelled to other people with haemophilia to relay information and try to identify their needs. We have created WhatsApp groups for parents, children and teenagers where we exchange advice, personal experiences and information on novel therapies outside Romania.

Last year we also had the opportunity and pleasure to volunteer as part of the organising team for the Haemophilia Caravan Project – run in partnership by the National Association of Romanian Haemophiliacs and the Romanian Haemophilia Association with the support of the NNHF. We travelled to five different cities, meeting extraordinary people with haemophilia, as well as their friends and healthcare professionals. We shared smiles, experiences and knowledge.

During a meeting at one visit, a participant said his objective was to access the intermittent prophylaxis programme in his region. He wrote this down and handed it to us in an envelope as part of one of the workshop exercises. When we met the second time, he opened the envelope with his objective without remembering what he initially wrote. He was overwhelmed by the joy of realising he finally achieved this and how much his life changed between our two meetings. The smile on his face stayed with us.

As part of our “haemophilia family” and association we meet community members quite often, however the new world context keeps us at a distance for now. We stay connected online and we are confident we will overcome this new challenge!

The Stīngaciu family shared their story with us as part of our ‘Get+involved: share your story’ series to celebrate World Haemophilia Day 2020.