Tymofii Varenytsya

The second child in a healthy family, Tymofii was developing normally in the first days, however, he sadly faced the early onset of SMA already in the third week after birth. The genetic testing soon confirmed the Type 1 diagnosis and tore the parents’ hearts forever apart.

In these 2 years, the family had to learn to build their life into Tymofii’s routines and devices. Tim is also taking Risdiplam as a part of Genetec’s Early Access International Program. 

As a participant of our SMA Program, Tymofii has recently received the so much needed LUISA noninvasive ventilator (NIVL) at a total cost of $11.780.

We are grateful to our partners in Germany, a distributing company Boergel GmbHfor their reliable service, as well as to the Ukrainian Women Movement and Iryna Suslova personally for helping to issue a customs declaration.

We’d also like to say thank you to all of you who supported Tymofii’s fundraiser, and to the Savostianyk family in particular. By adding the crucial part of the missing amount, they managed to close the collection in the shortest possible time! It’s always touching how SMA kids are helping each other♥️

Now Tymofii has caught a cold again, and LUISA is waiting to be set. We all just hope Tymofii’s life is no longer in danger and he’ll feel better soon.