Tag #Rare Genetic Disease

What is the impact of merosin-negative muscular dystrophy on families, and how are the Mulikhins addressing this challenge?

The Mulikhin family from Yekaterinburg tragically lost their 6-year-old son, Kirill, to merosin-negative muscular dystrophy (LAMA2 gene defect) in 2015. This rare genetic disorder also affects their 7-year-old daughter, Vasilisa, prompting Mikhail, a former special forces officer, to retrain as a rehabilitation specialist to help her and other children. Their experience led them to establish a foundation to aid families facing similar challenges.