[thumbnail]
[page_title]
At the time of diagnosis in 2019 Helena was one of 20 or so people with a known mutation on the GABRA 3 gene. She is one of 3 people worldwide wide with her specific mutation. There is only one published medical paper on the diagnosis. We have a limited idea of a prognosis and rely on a connection with the one family in the Netherlands we’ve connected with online. Helena has endured so much and is very loved.
