How we started?

Agotos LPF as2After establishing Agotos charity foundation I received many questions about its history. It is difficult to describe it in two sentences but I will try to do it in a short way. I am a mother of a little girl named Agota. She is my youngest, very cute and charming daughter. Unfortunately, when she was ~1,5 year old we found out that she is not developing as other kids and so our acquaintance with developmental disorders began. First, at the age of two, she was diagnosed with autism spectrum disorder. That was the time when I realized how little is known about autism in Lithuania and what weak services do these children get. Together with other active parents we established Lithuanian Autism Association “Lietaus vaikai”, which is still a strong and active NGO, fighting for the rights of autistic children and adults in Lithuania. For two years we grew with ASD diagnosis, but newly-emerging symptoms made us search for other reasons. Finally, at the age of 4,5 years, geneticists have confirmed that Agota has MeCP2 gene mutation and acknowledged diagnosis of Rett syndrome (RS). Once again I have immersed myself into search for information and ways of helping my child. Once again I found bare truth – there is a serious lack of information in Lithuania, and, unfortunately, even greater lack of therapeutic services to help girls with Rett syndrome reduce regression and achieve better developmental outcomes. Even though Rett syndrome is often assumed to be the heaviest form of autism, I realized that it has its own deep specifics and in many instances needs of girls with RS are different than those of children with ASD. So I decided to establish a separate charity foundation to help obtain and disseminate knowledge about RS, to help families meet, and most important – to provide an opportunity for girls with RS to get the necessary therapeutic services and technical assistance, which is not funded in Lithuania. I named this charity foundation on behalf of my beloved daughter as she is my inspiration and little sparkle of goodness and gentleness, sharing her warmth and smiles with all the people who surround her.