Rare family

At BfS, we encounter many challenging cases, but some are particularly rare – like families having two kids, who are battling different rare diseases at a time. Meet siblings Maksym and Zakhar.

Maksym, diagnosed with Whyte-Sutton Syndrome and a SCN2A mutation, faces a range of difficulties, including developmental delays, digestive issues, self-care difficulties, and has difficulty acquiring new skills or retaining information. As he navigates puberty, these challenges intensify, alongside emotional instability and occasional aggression. Maksym benefits greatly from sensorimotor rehabilitation, which helps him remain calm, improves concentration, and builds trust in his surroundings.

His younger brother, Zakhar, has a different genetic diagnosis – R 62.0 R 62.9: Mowat-Wilson Syndrome. Though his diagnosis is not yet confirmed and requires further testing, Zakhar also experiences developmental and speech delays, and struggles significantly with feeding issues. Due to difficulties with swallowing, reflux reflex, heightened sensitivity to food, and persistent vomiting, Zakhar is severely underweight.

BfS has funded Maksym’s rehabilitation and provided financial support for Zakhar’s genetic diagnostic testing.

Our commitment is to stand by families like the Dudkevych, guaranteeing they receive the necessary support for a better future. Learn more about our Program uniting global efforts in search of ways to deliver medications, testing, equipment, and nutrition to the most vulnerable rare kids in Eastern Europe. 

🧬 https://www.birdsforsofia.org/donations/save-ukrainian-kids/