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Meet the Families

The Robbs
Garrett Robb had developed four words by his first birthday, right on schedule. One month later, he inexplicably lost all those words. It took a year for Garrett's parents to learn why their son had stopped talking, and when they finally got a clear diagnosis, they were forced to face the realization that their son's life would be very different from the life they'd dreamed of for him. Garrett was diagnosed with Fragile X Syndrome. At five, Garrett now communicates with his parents and his unaffected younger brother using a combination of sounds, gestures and photos. His parents do not know when Garrett will speak again, or if he will ever speak normally.

The Kahls
The Kahl family has three sons, including identical twins, Conor and Ryan. It took the Kahls fourteen years to finally learn that Fragile X Syndrome had caused Conor and Ryan’s mental retardation. At 24, the young men are high school graduates, avid sports-men and both have jobs. There are some facets of life they may never master, including driving, dealing with money, dating and living independently. For the Kahls, the future holds many questions. The twins’ parents are deeply concerned about what may happen to their children when they are no longer here to take care of them.

The Gutierrezes
The Gutierrez family has a daughter and two sons. Both boys are affected by Fragile X Syndrome, but in very different ways. Miguel, at 8, can read and write, while Sal at 19 cannot. Miguel is very active, while Sal prefers to stay indoors , watching TV or listening to music. Doctors think Sal may also have Prader-Willi Syndrome, which is characterized by a chronic feeling of hunger that can lead to excessive eating and life-threatening obesity. In spite of the issues presented by their genetic conditions, both Sal and Miguel are happy, vibrant young men; they love people and love to socialize. Their sister, Marlena, 23, has emerged as a strong nurturer and advocate for her brothers. Their story is one of facing obstacles with the strength of family and faith.

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The Farbers
The Farbers have two children, 18-year-old Eric and 16-year-old Richelle. Both are affected by Fragile X. Richelle is an affectionate, outgoing teenager, but like most girls with Fragile X, she experiences some learning challenges. Her parents expect she will lead a normal life, possibly even having children of her own (who in turn may be affected by Fragile X). Eric’s developmental delays are more severe: he experiences significant learning challenges, he struggles with social situations and he finds it difficult to express himself. However, Eric's goal is to be able to work and live independently.

The LeCovers
Daniel LeCover has the full mutation of Fragile X. Now in his 30s, Daniel lives away from his parents at a group home. His days are full of work, learning, and time for relaxation. Dan’s mother Deborah shares her experience of letting Daniel go and the lessons she’s gained from him growing up.

The Eyres
Julie and Chris Eyre have one daughter, Jaden. Jaden has the full mutation of Fragile X Syndrome. While she is not severely affected, she does have some learning challenges and behavior issues. Many girls who have Fragile X never get the appropriate diagnosis because it can be difficult to recognize Fragile X behaviors in girls.

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