INGA.
Name “Inga” has got Germanic origins and means a “Daughter of Hero” (that meaning commits a bit 😉 ) Once we were thinking about name for our new-born daughter wanted it be beautiful, international and simple at the same time. Looks like it works now.
Wasn’t easy for Inga to speak her name at the beginning. She called herself “YOU” for a long time, cause we asked her “Do YOU want something” and she thought it was her name 😉 We thought as well it won’t be easy to find diminutive for name Inga but we were wrong – there are many! e.g. Ingusia, Ingula, Ingulka, Gusia, Ingunia, Gunia, Inguśka, Inusia, Inuśka, Inia, Inguś, Indzia i Ina (last one was invented by Inga herself!). Maybe you could find any more?

Inga fell in love with Monkey – her new standing frame. Once she wake up she calls “Inga stand, Inga stand”. We let her stand only for few minutes now but later on she’ll be able to use Monkey for a longer time.

In USA the Republican Party platform committee adopted language on last Monday supporting terminally ill patients’ access to drugs that have not been fully approved by the Food and Drug Administration. We know it’s a electoral campaign time there but nevertheless it gave us another piece of hope we’ll be on time with Inga’s treatment.

Last week in National Assembly for Wales conference centre we attended meeting about improving specialist neuromuscular care. Meeting was led by Mr Mark Isherwood AM and very interesting lecture about psychology needs was given by Dr Louise Hartley from Heath University Hospital. It’s good SMA affected people needs are noticed by officials around the world.