Good News Pages

written by Beverly & Nick Jones

Hank has always loved the water, from bath time as an infant to wading pools as a toddler to learning to swim in his grandmother's backyard pool at three years old.So all it took was a little encouragement , and Hank Davis, at seven years old, turned into a fearless kneeboarder. (That's riding a molded vinyl board while being pulled by a rope attached to a fast moving boat.)

That accomplished, Hank's real show begins. He completely rotates the board while moving back and forth across the wake, most of the time waving with one hand while holding the rope with the other. And that's not all. Hank and his younger brother, Clay, turn all eyes on the lake as they kneeboard together, on two boards, crossing back and forth behind the boat.

At thirteen, Hank found the courage to try water-skiing, and after a few tries and lots of support from his ever patient father, his applauding mother, and his encouraging brother, he was UP! From there, he has moved on to the slalom (one ski). Hank has just turned fifteen and is looking forward to another summer on the lake. Who knows what he will master next!

Background: Hank Davis was diagnosed with FX at five. His parents were concerned that his speech development had been delayed, that Hank had unexplained outbursts toward his younger brother, and that Hank exhibited fear and panic in certain situations. The diagnosis gave our family a concrete area from which to work to do our best to help Hank do his best in the world. We are so proud of him, his brother and his parents.

Beverly & Nick Jones, grandparents

Randy Green shares with us an experience, familiar to most Fragile X families:

“For many years after Matthew was born, we had no idea what had been causing his delayed developmental and behavioral problems. He was placed in an early intervention program at the age of 18 months and remained in special education classes through his school years. At the age of 4 in 1987 we had him tested for Fragile X through a chromosome test but the results were negative. However, when he was 11, we had him retested using a DNA test and found out that he is affected. That’s when my quest to learn all about fragile X started.

“Almost 18, Matthew can only read first grade sight words and has poor handwriting, math and social skills. He attends the PASS program at Sheridan Technical Center where he is learning functional and independent living skills and receives daily community-based instruction and job training. Matthew is a very independent young man and loves to help around the house. He also loves to participate in sports activities and has played Challenger Little League, in various special soccer groups and through Special Olympics has participated in floor hockey, tennis, and gymnastics. He likes to swim, play basketball and football, ride his bike, and he recently acquired a scooter.”

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