Tiredness. Despite the great and happy fact that Inga takes a part in clinical trial for 6 months already, we cannot escape tiredness. Many hospital appointments, traveling, constant day time schedule changes, physiotherapy, family temporary separation etc… Even usually bright Inga has moments of sadness and nostalgy. Yesterday’s all day long travel to Milan took its toll. Inga does not realise everything, but we simply miss normal and careless Inga’s childhood she could have without SMA. We try to wash these thoughts away but in moments of exhaustion they usually come back. Additionally, today’s family celebration – Maks’ 11th b-day – we’ll spend separately… Luckily with video calls we’ll be all together at least virtually. Against all these odds we look forward into the future with hope and we wait for the first Inga’s step to come one day!

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