Zubin is our sweet, charming son whose smile often lights up a room. In his first few years of life, everything came slower to him than most children, talking, walking, all of the usual milestones parents watch with excited anticipation. We were worried but thought that he would eventually catch up or maybe he would just always lag a bit behind. It was not until September 2007, shortly before his third birthday and the birth of our third child, that we learned he carried he diagnosis of Duchenne Muscular Dystrophy.
That was when our lives changed permanently. We no longer felt the carefree existence of parents whose dreams for their children play out day by day. Instead, we were devastated by the future inevitability of Zubin's deterioration and early death.
It took us some time to understand our new life and its implications not only for our son, but for our entire family. We still try to understand that every day. But while we do that, we must also take action. We must work towards a cure and the end of suffering of young boys and their families across the world. We want all families to be able to lead that carefree existence we once had.