Felipe Ferreira – Casa Hunter

Felipe Ferreira

Leandro Gomes Ferreira
18 de julho de 2018

Felipe Ferreira

When I realized how severe the disease was, I sought treatment to understand the syndrome and to have a closer follow-up. When the diagnosis was confirmed, I did not panic, but I am young; I want to have normal and healthy life, with treatment. Meeting with the CASA HUNTER was precisely due to a mismatch. I went to an appointment with the geneticist, and there I saw professionals with the CASA HUNTER jacket. My cousins also knew about it and we decided to go there. On the first day, I remember quite well, it was October 1, 2014, I went there with Marcelo. That was my first contact with Tony. As the saying goes, the first impression is the one that counts: a super welcoming, nice guy… I had never even heard of him, and as soon as I met him, I had the feeling that I had known him from before. There, I began my friendship with him and all the people of CASA HUNTER. From that moment, we talked and Tony was outraged that none of us in the family were doing TRE treatment. He started making the arrangements himself, and from then on, things happened very fast. Tony was eager to help, to no personal advantage, just thinking about others’ well-being. He knows the syndrome well – his child is a patient – and is very humane. If it were not for CASA HUNTER, I would not be doing therapy right now. Because of the treatment, I felt better, and it even improved my personal life. My wife is pregnant, and now I need to take better care of myself. We need to continue fostering studies, seeking solutions, because all MPS patients hope that this will end. I want to see my son grow up, be a good father. And enzyme replacement is all I can do, to be able to provide quality of life for my family.