Story about Fragile X Syndrome .

My journey

Aug 30, 2017

By: Kerry

Year Condition Began: 1976


Aged 20 after a family history of Fragile x and pregnant I was requested to take the fmr1 test which I did to discover I am a carrier my daughter now aged 20 was recently tested and found NOT to be a carrier.
In 2011 I became pregnant again with my son I was during early pregnancy offered the test to determine the sex of my unborn child so I knew at 9 weeks he was a boy I kinda expected problems unfortunetly my son was born poorly and has been in and out of hospital over his short 5 years (not related to Fragile x) 2 years ago he was tested for Fragile x and it was only determined after my daughter was tested that my son had beeen tested several years before which we knew but I was told by his paeditrian that he was negative he is in fact a carrier on speaking to the genetic councillor and explaining his poor behaviour lack of concentration "active learning" poor sleep we were told that this is symptomatic of him being a carrier of fragile x, it is now a battle to get him educationally assessed as he is behind the other children in his class. His paediatrician has now requested psychological assessments but advised that this is not a short process and could take years I have had to fight for my son to be recognised with the Fragile x as he is not an average child he is very bright but his attention/concentration are none existent he has OCD bouts and is unbelievably hard to handle.
Being a carrier myself I have hit perimenopause (I'm 40) my memory is horrendous and I suffered with anxiety and depression now for 20 years educationally I wasn't the brightest and am now returning to college to become a qualified chef.
My battle for my son to gain help begun 3 years ago as he is currently on DLA for his other issues (unrelated to Fragile x) I can't see t being an easy or quick process but I want my children to have the best possible if that means additional help in school so help me god I will fight till my death

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