Nika Alexanyan is from Armavir in Russia. Nika was born on September 24, 2018, and has SMA type 1. Since three months of age, the child was on supportive therapy as a part of an open study by Novartis.
Unfortunately, Novartis is no longer developing this particular supportive therapy drug. However, Novartis promised to administer Zolgensma to all children of this open study instead.
Nika will receive her life-saving Zolgensma shot through Novartis Pharmaceuticals approximately mid-November 2021.
All the money that Nika's family raised will be used to pay for Nika's rehabilitation, and to support other children with SMA.