June 3, 2013
I hadn't ever heard of tuberous sclerosis when our son was diagnosed at 3 weeks of age. I remember being in shock upon receiving this diagnosis. I visited the Tuberous Sclerosis Alliance website almost immediately and had no idea what our future would hold. I remember reading through resources for the newly diagnosed and printing off a notebook that would help me organize all my son's medical care. I still use the notebook today, four years later. The TS Alliance has continued to provide invaluable resources as we navigate our lives with TSC.
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MY ROLE:Client Served