Nataliia brightens up when talking about how being on treatment with SMA medicines has changed her life. A 34-year-old English teacher from Ukraine, Nataliia is finally receiving treatment in the Czech Republic, where she recently resettled as a refugee.

Natalia was diagnosed with SMA when she was one, shortly before her older brother passed away from SMA at the age of 8. Growing up with SMA in Ukraine was challenging. The infrastructure was poor and people were unprepared. Schools would not take her in because of her disability and Nataliia’s teachers had to visit her at home. But as an adult, Nataliia leads a rather independent life. In Kyiv, she studied at university, worked, and comfortably moved around her neighbourhood in her power wheelchair. Because round-the-clock personal assistance is not fully reimbursed in Ukraine, Nataliia lived with her parents, but her friends drove her around for outings. Still, since medicines for SMA were first approved, she had dreamed of receiving one. Unfortunately, this is still a rare opportunity for adults living with SMA in Ukraine.

Nataliia’s future is still clouded with uncertainty, so, achieving access feels bittersweet. Nataliia had never wanted to leave Ukraine. She misses her friends. She feels that her freedom of movement is very limited because of inaccessible infrastructure in the small Czech village, where there are not many opportunities for entertainment. And she feels great financial responsibility towards her family. Still, times are not ripe for her to move back, yet. She wants to go home, but she will do it when she is sure to have access to her SMA medicine in Ukraine. As she patiently waits, she has one dream for herself and fellow people living with SMA: