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The NFXF Blog



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 [...]


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, [...]

Our Amazing Children

By |Jul 2, 2011|

Alicia is 10 and Lucas is 5. Both full mutation. Both kids were diagnosed a few months ago. It was a hard pill to swallow but we were so glad to finally have a diagnosis. [...]

A Double Blessing!

By |Jul 2, 2011|

My husband and I were shocked to learn at my nineteen week ultra sound that we were having twin boys. I gave birth to two seven pound babies on October 21, 2008, named Alexander and [...]

Being the best person you can be.

By |Jul 1, 2011|

I think it is important for everyone to be the best person that they can be. It doesn't matter what your abilities are. Every person in this world has a place in it, and can [...]