Not only Giuseppe
This message is to all the parents who have a child affected by a mitochondrial complex I deficiency. Honestly and importantly, we are not looking for the cure for a single child. Rather, we would like to create a group of people interested in finding efficacious treatments for the devastating disease which affects numerous children. Currently, active drugs for mitochondrial disorders are still an unmet need.
We are aware about the pain and sense of impotence that pervade a parent when the child is diagnosed a disease for which there is no treatment. We also know that there could be different reaction the such a pain. But Giuseppe, with his dignity and beautiful smile wants to send a message to all the children that have similar disorders and parents that struggle like we do. We have built this foundation after having realized that the research in this field can lead to fundamental advancement in knowledge, is feasible and necessary to find active drugs for our children. It’s a hard task, but the determination of a Mother and a Dad can make it, love for our children must give us hope, the hope that none physician can steel from us. This is the reason why we need to meet and discuss with other parents with similar experiences, so that we can help each other to go forth through this tough task. We hope to hear form you so that we can count and inform us and share information. We do not want to fight a hopeless battle, rather we want to have the certainty that the scientific research will find the way to identify all the genes of the mitochondrial respiratory chain and, eventually, active treatments for this terrible disorders. Then, our children will have the chance to live, live healthy and happy, to dream and make projects, all the projects each parent has and has the right to have. Dreams about the baby is going to come and his/her future like each child in this world.