Sofinka will turn five this year; she was born with the most severe form of spinal muscular atrophy at the time when treatment was not available in the Czech Republic. Her parents could not put up with the vision that she might die and they managed to have Sofinka participate in the Zolgensma gene therapy in the USA. The disease then stopped progressing; however, they had to start a cycle of everyday exercise, physiotherapy sessions and regular trips to Boston for check-ups and to Rome to obtain a new medicinal product that allows Sofinka to make progress but that is not approved for reimbursement by the Czech insurance company. Thanks to regular neurorehabilitation programmes, Sofinka makes extraordinary motor skill progress, but the programmes are very costly. Your donations will help her parents to pay for such programmes.

 

The story was nominated by Jaroslav Rummler who has been a long-term supporter of Sofie on her way to making first steps.