Michelle and Joe
Michelle and Joe, parents of Logan (11) and Matthew (8). Matthew has Batten Disease/CLN2 and was one of the first children in US to receive Enzyme Replacement Therapy beginning at age 4.
Clinical Trials: Our son is on the cutting edge. He IS the data. (CLN2 / Batten)
Parents of two sons, one of whom has CLN2 (Batten disease) and was one of the first children selected for a clinical trial, talk about what it means to be one of the first families in a clinical trial. “There are so many families that came before us, that made a sacrifice. We’re in unchartered territory now.”