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The NFXF Blog


4 brothers 3 with Fragile X

By |Jul 22, 2011|

I really don't know the story that well, my mom could probably share it better, but i wanted to tell it. My mom is the eldest of 4 brothers also the only one that doesn't [...]

Elise, 8 yrs old

By |Jul 22, 2011|

Elise is 8 years old and full of life!! She is happy, bright and kind. Elise continues to thrive on her own and with educational/social intervention as needed. She takes her role as sister, cousin, [...]

Fragile X

By |Jul 22, 2011|

My son Grayson was diagnosed with Fragile X Syndrome when he was 7 months old. His pediatrician, who is absolutely the most amazing doctor, noticed that he was mildly delayed. She said that she wanted [...]

Mick Phelps

By |Jul 22, 2011|

Our son Mick was diagnosed with FXS a year ago, just before his 2nd birthday. I had never heard of FXS nor was I aware that I carried the gene. Mick is the youngest of [...]

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 [...]


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 [...]