8 thoughts on “I’m joining the crowd.

  • April 10, 2008 at 8:00 pm
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    thank you for your honesty. i know i am blessed to have known so much going into punkin’s birth and for having so many wonderful doctors the first time. no one should have to go through what you did.

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  • April 11, 2008 at 10:57 am
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    I very nearly didn’t share because it is so overwhelmingly negative but I was in a really bad place at that time. I just figured there might be others out there who were blindsided the way we were and I just wanted to be truthful about how that felt.

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  • April 12, 2008 at 10:56 am
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    It is an unfortunate reality that this story is one which I am sure can be repeated several times over by other FRAX parents. My own experience was almost identical in our local Health Centre in Scotland around 5 yrs ago!
    We knew there was a problem with our 3yr old son’s speech, went through various tests & assessments before being summonned to hear blood test results from a locum paediatrician. “Your son has Fragils X Syndrome. Geneticists will be in touch with you some time in the future, they can tell you more.Have a nice day.” I went home – none the wiser!! Searched the internet for this unheard of blood disorder!! That is how I learned what in fact my son had. I smashed holy ornaments, cried, cried, screamed, cried. These “professionals” have no consideration for the impact they can have with this type of news – because they’ve probably never been there.
    We are 5 years on & coping not too badly. Our son is getting a lot of help from our local authority & that helps lessen the everyday heartache.
    I search the web often & cry every time reading other people’s experiences. We can help each other just by knowing that we each exist out there on the web!! The internet in fact has proved to be one of our few reliable friends in all of this. It tells us what the professionals don’t want to/ can’t & it gives us access to info, friends, help groups etc. Even my son enjoys searching the internet for pictures of bouncy castles!!!
    take care & stay strong. a Scottish Frax mum.

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    • April 24, 2017 at 2:55 pm
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      16 juin 2010Super article , je vais tester une petite remarque : il y a une fermeture de parenthese en trop dans cache_get(‘my_module_data’))cf :if ($cache = cache_get(‘my_module_data’)) && !empty($cache->data)) {

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  • April 14, 2008 at 7:31 pm
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    Siobhan, thank you so much for commenting. I’m so sorry that you had such a similar experience to ours. It is so wrong and unfair.

    I’m hoping that if we all band together that the next time someone is thrown to the internet for answers that maybe they find one of us and at least have someone to reach out to that lives this life.

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  • April 14, 2008 at 10:54 pm
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    I do not have a website so I am not sure I can reply, but our story is the same. Our pediatrician kept telling us to wait six months, our youngest son would be fine. When we finally received a diagnosis, I referred my self on to a geneticist, because there was not a doctor to do it. It is tough.

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  • January 23, 2011 at 4:46 pm
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    I had not read your diagnosis story before today. I am in tears remembering our own diagnosis. Amazing how similarly we reacted. Thank God for the NFXF.
    Bonnie´s last blog post ..Sippy Cups Revisited

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