By: Jaya Alberto Motta
My name is Jaya Alberto Motta and I was born in Nepal in 2000. When I was only 3 years old, I was adopted by an Italian family and since then I have lived in Italy.
I am a boy affected with FSHD and for this reason, momentarily, for the last 7 years, I have been confined to a wheel-chair. I really want to underline “momentarily”, as my biggest dream is that, one day, I will be able to walk like everyone else. And you know what? I am sure that one day that moment will come, as not just I, but all those people who have helped me and who are still helping me, keep saying that, yes, WE WILL MAKE IT.
I hope this helps you understand that even if so far my life has not been easy at all, full of sacrifices, day after day, especially in this period of my adolescence, I am still extremely positive about the future and about the realization of my greatest desire.
If you ask me what I think about the research conducted in the field of FSHD, I would say that this is an incredibly wonderful and powerful thing. In fact, my opinion is that moving forward, striving to find a cure to this disease, is the right and only way to go. And, believe me: sooner or later, a solution will be found.
When they tell me that research is going on around the world, I feel really happy and hopeful because I think that, if research moves ahead, that means that new discoveries have been achieved that, in their turn, have raised new questions which now require new answers and all of this process will eventually lead to “the” final answer and solution.
Even though I am only 17, I am very interested in FSHD and want to bring my contribution. Personally, I am particularly focused on engineering rather than scientific research. In fact, one other big dream of mine is to become a bio-robotic engineer in order to be able to invent very thin types of exoskeletons that can help people affected with FSHD to walk again.
I really hope that all those from the various FSHD associations around the world, can contribute to fund research and any other activity which can result in real “game-changers” in the quality of life of so many people.