Our story (the brief version)

Like many parents, we first learned of Fragile X when our son had unexplained developmental delays that led to the usual round of tests, neurologist visits and finally a trip to the geneticist.  Elijah was diagnosed with Fragile X Syndrome (FXS) in October of 2011, just two months shy of his 2nd birthday.  Since then we have found ourselves on the expected roller coaster of emotions.  Some days you can truly appreciate the beauty of the little milestones that are such tremendous victories for us, and other days those milestones are just bittersweet reminders of how many of those markers you may never see.  Every parent dreams of the perfect life for their child.  In our case we’re having to learn to find a different kind of perfection for Elijah.


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