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The NFXF Blog

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Pride and joy

By |Jul 22, 2011|

I have 2 grandsons with Fragile X. I'm so very proud of them. PJ just graduated from 8th grade and will be going into high school. Hunter will be going into the 8th grade. They [...]

Dylan Ray Gillis

By |Jul 7, 2011|

Dylan was diagnosed when he was 3 1/2 years old with Fragile X Syndrome, today he 20 years old. He graduated with the Class of 2010 from Choctaw High School, in Choctaw Oklahoma. He loves [...]

His Smile

By |Jul 6, 2011|

I have three daughters and one son who is diagnosed with Fragile X Syndrome. When we first found out about his condition at age 1 it was scary not knowing what to expect, but as [...]

K-BUB

By |Jul 6, 2011|

Kaleb is my three-year old grandson, diagnosed with FXS, like his older brother, Alex.  He will be starting developmental preschool in the fall.  He and Alex love each other like crazy, but fight like cats [...]

Sweet Caroline

By |Jul 6, 2011|

Our Sweet Caroline is now 8 yrs. old and amazing!  She has a smile that lights up a room.  She has a passion for life that many envy.  Her joy is contagious.  She told me [...]

Fragile X – Just a diagnosis!

By |Jul 6, 2011|

I knew at age 4 months that Calvin was different. My son did not meet any of the typical milestones for a baby his age. He rarely cried, often forgot to breath and was quite [...]

Avery

By |Jul 6, 2011|

On February 4, 2008 I gave birth to our second son, Avery. Within 24 hours after Avery was born, I knew that something was not quite right. Over the next 16 months, we struggled to [...]

aleX the eXtraordinary!

By |Jul 5, 2011|

Alex is my six-year old grandson. He was diagnosed with Fragile X (fully mutated), and autism, among other things. I have had guardianship of him since he was almost three. When he came to live [...]

David Allen and Special Olympics!

By |Jul 5, 2011|

David has always been very athletic and plays every sport that Special Olympics sponsors. I was not surprised that he was front and center in the photo accepting the check for the group that he [...]

My Co-Worker: Sam Jacob

By |Jul 5, 2011|

This is Sam Jacob, he is my co-worker at at the National Fragile X Foundation, and he is one of the coolest dudes I know. No, scratch that. He is THE coolest dude I know. [...]

Fragile By Design

By |Jul 4, 2011|

Sam Blackwood is a wonderful 2 year old boy who tries hard to please and just as quickly test us with his limits and boundaries. He loves anything that moves and likes to be in [...]

The Loganator

By |Jul 4, 2011|

Logan is almost 3 years old, and was diagnosed 1 year ago. He is the sweetest, happiest little guy you could ever meet. He loves to smile and laugh, loves watching Yo Gabba Gabba, swinging, [...]