Jasmine Barnes (Glen Burnie, MD)

by Shante Barnes

My daughter Jasmine  is 7 years 11 months old.  She will be 8 on July 1st.  At age 4 she was diagnosed with Fragile X Syndrome.  It broke my heart was devastating. At the same time everything she was going through like her difficulties in math, difficulty transitioning from class to another, and her sensory issues all had been given a name – Fragile X Syndrome. As I look back over my life I realize some of the things Jasmine went through I went through as well.  After looking through old papers from the geneticist I saw in Virginia, I realized that this is more and that it was my turn to get tested.  I was always told that I was a pre mutation unaffected carrier but I barely survived high school.  So I felt like after all these years of struggling and wanting to fit in that formal testing was needed for me.  It was not surprising to me that my test came back positive for the full mutation of fragile x syndrome like my daughter.  The good side to this story is that I graduated high school with a diploma and that is what I want for my daughter.  I believe with love and support from myself and the schools she will overcome all the obstacles in her way.  I pray that they keep funding STX209 ad find a way to get this drug FDA approved.  This drug has given kids a power we never thought would happen and I hope someday to be able to have Jasmine put on it.