Kate was born in June of 2014 and for the first six weeks of her life everything was pretty great. Then Kate started to breathe faster than normal and was admitted to the hospital for the first time. Over the next six weeks Kate struggled to breathe even more as she became weaker and weaker with no apparent reason why until one day when I came across a blog from the UK about a baby with this extremely rare disease called Spinal Muscular Atrophy with Respiratory Distress or SMARD for short and all the pieces seemed to fit. Kate was tested for SMARD soon after my online discovery but she sadly passed away two weeks before those results came back at just three days shy of being three months old. When Kate was diagnosed there was hardly any research being done, no nonprofit and no awareness being raised for this devastating disease. A few years later when SmashSMARD was born so was hope for a future where SMARD is a curable disease. We will continue to fight until the day that is true and no other family has to worry that this disease will rob them of their child’s future.
