Meet Marcela Delgado, a parent of a 7 year old Apraxia Star from Chile:

My personal connection to apraxia is my 7 year old daughter Agustina Santis, my motor and motivation. Seeing the little information that existed in our country, the lack of support available for our children motivates us as families to generate instances of awareness and work to achieve our goal of Apraxia becoming more recognized and understood in Chile.

I learned about Children’s Apraxia in 2021, when my daughter Agustina Santis was diagnosed with A.H.I. (Apraxia del Habla Infanti or CAS). That year, my family and I sought information about this condition, so we went to Apraxia Kids to be able to understand and learn more about other children and families so we could help our daughter.

We felt that declaring a National day for Children’s Speech Apraxia in Chile would open many doors for us to be able to continue with our work of awareness and changing of laws. Knowing that other families who have spent many years with the diagnosis would finally be seen fills us with both pride and emotion. We feel that this is a great opportunity to continue working in search of support at the health and education level.

In April 2023, Carol Delgado, my sister and our current treasurer, and I decided to create the social network @soyapraxia and started searching for families within the country with children diagnosed with AHI, uploading information to the social network, delivering flyers and registering families that were joining.

Slowly, we began to share information through the social network, supported by testimonies and studies from other countries. This is when we again connected with Apraxia Kids in search of more information, and they became a huge reference for us.

The social media following was growing and this information channel was nourished by data, testimonies, interested professionals, and more families who sought answers and a guide on how to achieve the goal of their children speaking.”

It was necessary for SOY APRAXIA to move forward and that was when the magic began to occur. More people joined this initiative and set as the first objective to make this condition known and support all families who found themselves in the same situation. Gisela Valenzuela, current secretary of the group and teacher at the school where Carol and I studied, Abuela Apraxia, and speech therapist Aileen Hayes, came together as professionals to help inform and guide families and the Chilean community.

In May 2023 we decided to create the “SOY APRAXIA” group. There were so many reasons for this decision, as we were living in a scenario where there was no medical clarity of diagnosis in Chile, there was no school support, and most distressing of all, there was no information.

In that moment we saw how invisible my daughter Agustina and other children with the same diagnosis were before the social health system. 

SOY APRAXIA became a place to seek answers for many parents and family members of “children who don’t speak”, who were misdiagnosed with other disorders and mistaken conditions. It became a source of emotional support and guidance for parents distressed by feeling “alone”.

In August 2023 Steffani Rojas, mother of a child with apraxia, joined this initiative with the same objective of being “the voice of children”. Her knowledge in the health area began to help in the majority of interventions in the health committee together with María Paz Ponce in the education area and Marcela Delgado as head of the Agrupación, exposing it to various authorities.

A large milestone for the group was when a meeting was held on August 29, 2023 with Senator Ricardo Lagos Weber, who connected with us and exposed the needs for our children. From that moment on, the team of Senator Lagos Weber began hard work to achieve our first objective of declaring the national day of awareness of children’s apraxia. For the first time, the group felt supported by an authority, as the Senator’s team demonstrated a 100% commitment to our cause.

At the same time, our group connected with the distinguished Dr. Palma, who showed us his support and empathy.  He understood our feelings and the great need to visualize this condition to the country 

The group held a meeting to expose the condition of child apraxia in October 2023 before the health committee. In November 2023, the vote for this committee of the senate chamber was held to later pass as final step to Chile’s chamber of deputies.

Our collaborator María Eugenia Miranda joined us in the month of September 2023, becoming the “community manager” of the Group and delivering all possible information through the social network that helps families in Chile.

Now in 2024, May is officially Apraxia Awareness month in Chile!

Pictured: all the mothers, aunts and grandmas who worked to achieve National Day in our country.