Initial post here. Our son, Jojo turned 5 last December. He has SMA 1+ (a stronger type 1 but weaker type 2). His two most favorite things to do are: driving his wheelchair fast and playing on the computer. As horrible as SMA is, and with all the challenges and difficulties it brings to us, we still have so many things to be thankful for: 1) Our jobs and how our employers/supervisors have allowed us to change our work schedules so that there is either my husband or me at home with Jojo. 2) My husband's health insurance that pays for all the equipment that our son needs, his medicines and special diet, and even our 2x/year hospital stays. 3) A hospital an hour away from us, with a PICU that has intensivists who are more knowledgeable and helpful than the pulmonologists we had been to, and who respect our knowledge about our son's care.
4) Our parish school board who provided our son with his own laptop computer, adapted switches/controls so he could use the computer (almost)independently, arm for the computer, deltoid aids. I thank God, too, that I am married to a man who is as devoted to my son as I am. He equally shares in the day-to-day (and nights, too) care of Jojo. We do push each other's buttons a lot when we are both tired, but I still think he is the perfect match for Jojo and me.