My name is Mariana. I live in Argentina and I am 19 years old. I was diagnosed with CHARGE when I was six months old, and the expectations doctors had about what I would be able to achieve in life were very low. Despite that, and in a way thanks to it, I have achieved many things and I am still reaching new goals. I am moving forward in my studies and in my work.
Throughout my life I have had many doctors and very complex medical situations. Up to now I have had seven surgeries, six of them related to CHARGE. All of this has taught me how important it is to get more than one opinion when it comes to my health.
Over time I also discovered one of my biggest passions: creating materials for children who are deafblind. I feel that my own experiences with audiovisual difficulties and learning challenges will allow me to support those kids from a different place.
Everything I have lived through has shown me that even when the path is complicated and other people’s expectations are low, there is always a way forward. I learned to turn my challenges into tools and my experience into a bridge to support others. For anyone living with CHARGE and for the families who accompany them: if you ever doubt what you or your children can achieve, keep going. By moving forward and trying, each person at their own pace and in their own way, it is possible to reach things that once seemed impossible.
