Our son

Many individuals living with Fragile X work hard to get through every day.  They face numerous challenges, from mild learning disabilities to significant language and cognitive abilities.  For Justin every day is a challenge that brings debilitating anxiety that is becoming more significant as he grows.   Going to new places and being in new situations, which for many children is fun, is terrifying for Justin and requires tremendous preparation yet despite that, usually results in displays of inappropriate behavior.  Justin attends school, but learning is difficult and just the trip to school is difficult some days. Though communication is challenging for Justin, he is growing and making progress in a non-traditional school setting and with dedicated specialists who understand that new skills are acquired slowly and through repetition.  Complicating the situation are the continuing seizures and limitations of current medications.

In spite of these difficulties, Justin has a wonderful, endearing sense of humor, a desire to succeed and be with people he loves.  Like any child, Justin can be very silly and his smile is completely infectious, lighting up his face.  If you want to see persistence at work, just watch Justin doing a puzzle, which he loves, or trying to solve a problem.   And when it comes to hugs, there are none better than a Justin hug!

The dedication of the health professionals involved with Fragile X Syndrome is committed to developing an effective treatment or a ‘cure’.  The work is progressing rapidly and the possibility of a better quality of life for Justin and thousands of children with Fragile X is proving to be an obtainable goal.

Upcoming Events

Join us Saturday, November 10 for A Walk/Run Event Benefiting Fragile X Research!
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Help the Fly with Me Fund raise necessary funds to help families living with Fragile X Syndrome. Thank you for making a difference in their lives.

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