I knew about SMA or Spinal Muscular Atrophy at early age, then, the next time I heard about it was when I signed a petition for the cure for this disease. At that moment I was pregnant with my second child. Late during the pregnancy my very active boy stop moving for a week, was the first time that I couldn't feel him at all, according to the doctor it was normal, then he started moving a little bit but after a while, he stop moving once again for 4 days. I was scared to death. Finally my baby was born, a beautiful and healthy baby boy. But his breathing was irregular, hard and heavy, I could see his belly moving heavily up and down, but not his chest, raising the doctor's attention. I was scared, but time showed my baby was ok, he was healthy and I had nothing to worry about, my nightmare was just that, a nightmare and I was able to wake up of. Unfortunately that is not the same case for thousands of parents. Spinal Muscular Atrophy, is the #1 genetic killer of children under 2 years old, 1 in 40 people carry the gene that causes it and nobody knows about it, not until it happens to them. That is the common factor among SMA parents, they never heard of it until it happened to their children.  There is no treatment, there is no cure, but according to American scientists specialists in stem cell research SMA is the disease closest to the cure. They estimate the cure could be developed in less than 5 years if they count with the necessary funds. This news drove thousands of parents to try to raise that money themselves, while SMA foundations try to get the support from Representatives and Senators thru petitions and letters signed by the same parents, in order to pass the Treatment Acceleration Act project, currently in the Congress.  From $20 to $40 million dollars are needed per year to finance those studies. And in the meantime, while the miracle happens, thousands of parents will loose their children to this horrible and cruel disease that shuts down their bodies little by little in a progressive way. Vital and basic actions like swallowing, coughing, breathing, being fed by the mouth are not a possibility, but these babies were born healthy after perfectly healthy pregnancies. This didn't happen to my child, but happened to thousands of them.  Nobody had heard about this disease before it is diagnosed to a loved one. This have to change, I could carry the gene that causes it, my husband could carry it too, if so, my children would be carriers, we haven't been tested. Yes, tested, there is a test that could prevent SMA from happening but since no one have heard of it, no one had thought about getting tested. And not knowing is a challenge even for SMA parents while trying to raise funds as well as awareness, because nobody knows what they are talking about, and for matter of fact, sadly, nobody cares about what they don't know.