The following is second in a twelve-post series.
Day One of our journey fell on July 24, 2006 – the day a geneticist delivered the crushing news that Taylor has infantile Batten disease. The doctor told my parents nothing could be done. His words fell on deaf ears; on Day One, my family vowed to fight until we had nothing left.
On Day Two, we discovered we couldn’t do it alone.
A few months later, my mom and I founded Taylor’s Tale with a group of fellow believers in a friend’s living room.
Since that day, we’ve become a household name in the worldwide fight against Batten disease and an important voice in the rare disease community.
The road hasn’t been without twists and turns. We’ve run into our fair share of roadblocks and taken a few detours. We’ve picked up more than a few bumps and bruises along the way.
But we have several exciting projects on the horizon and a great team in place to bring them to fruition. And if we stay true to our never-quit philosophy, continue to surround ourselves with fellow believers and are fortunate enough to stumble upon a bit of good luck, we can change the world.
Yesterday, Mom and I spent the day with fellow believers Judy Mayer (who took over public awareness chair duties for me this fall) and Jane Grosse, our fund development chair.