October 24, 2013, at Childrens National Medical Center in DC. A genetic counselor and neurologist were trying to explain to me and Kristen Lasko what it meant that Max had SMA (spinal muscular atrophy), type 1. First they said that individuals with type 1 SMA were not expected to walk. Then they added Or hold up their head on their own. By this point we were so emotionally wrecked, it took us a minute to realize that they still had more to convey. Because of the weakness, even breathing and eating become difficult... statistically, 50% of children born with SMA type 1 dont make it past age 2. Ill never forget what came next. Through tears, Kristen asked, And those that do? The silence was deafening. Eventually the doctors explained to us that they didnt really know, and that what was possible for individuals with SMA type 1 was improving with each passing year. But in their moment of silence, it felt like all the hope had been sucked out of us. However, our medical team did do us another favor. They encouraged us to connect with others affected by SMA. When we were ready, we began to search and read online. One inspiring voice we encountered was Alyssa Silva. Alyssa is a recent college grad who blogs about living with SMA. Right now she is attempting to make a documentary about living with SMA in order to give hope to individuals and families affected by SMA (people like me and Kristen). Please consider supporting Alyssas Kickstarter project. And spread the word (by liking or sharing this status?). Only 20 hours left to meet her goal!
Posted on: Tue, 01 Jul 2014 01:52:42 +0000