Unfortunately SMA takes away quite a big part of childhood from Inga. Once other kids play on the playground – Inga do her physiotherapy and exercises. When other kids run she just follow them with her jealous look…

Probably everyone of you remember how it was fantastic to jump, jump because you’ve been happy, nonstop jumping until parents said to stop because it’s bed time. Inga has never stood independently so she has never learnt to jump either. But she carefully observe other children and finally she has found her way to jump: while standing in her splints by the standing frame. Being more then 3 years old she’s jumped for the first time in her life… She enjoyed that so much!

Sometime we close our eyes and see Inga jumping on her own without any support. W dream about that. The dream of Spinraza (SMA drug) is with us every minute of our life…