English
Հայերեն
Русский
Nineteen-year-old Rubik and his six-year-old sister Eva have never walked. Rubik has not even been able to sit upright for more than a year. Weighing only 15 kilograms, he spends all day in the same position due to severe muscle deformities.
Day and night, Rubik relies on a special oxygen device to breathe. Both siblings live with a rare genetic condition — spinal muscular atrophy (SMA).
The family’s greatest hope is that SMA medication will become accessible not only for Eva but also for Rubik, to help stabilize his breathing and slow the progression of the disease that continues to worsen daily.
