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Fragile x syndrome

Lexi58Lexi58 member
in Special Needs
Hi everyone! Not ttc yet but in about a year we will be. I have a 50/50 chance of being a carrier of the fragile x syndrome gene. Just wondering if anyone here is in the same boat? I will be getting tested in April and just need some support as I'm nervous! Thanks!
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Re: Fragile x syndrome

  • mopdop2000mopdop2000

    Hi there, I have an adopted 4yr old, Sir I, with Fragile X Syndrome, so I was not the carrier. There is an AWESOME Fragile X facebook page that is super active and supportive. I not sure how to post the link here, but search for Fragile X in facebook and you should find it.

    There are loads of women there from all walks of life: those who knew nothing about Fragile X prior to having kids; those who knew they were carriers & chose to have kids; those who had daignosed kids & had more; those who adopted with no idea what was coming; those who adopted knowing about the Fragile X; and every other type you can imagine :)

    I can't help you too much with your worrying before being tested & then deciding what to do. As you m ight know, if you are a FX carrier, there is a 50% chance you'll pass that X chromosone onto any kids you have. I did do the waiting for blood work to come back on Sir I and hat waiting was tough. He was diagnosed 2 yrs ago and is doing as well as possible. He is still non-verbal, wears diapers and needs constant supervision and, to be honest, there are some really rough days with him. Being non-verbal he whines ALOT, and I think since he started having seizures that aren't 100% controlled yet,  he has lost some of his sign-langauge.

    However, he brings so much laughter to our family. He loves being the center of attention and tries to copy everything his older (biological) brother does. Even on the hard days, I couldn't see our family without him.

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  • Lexi58Lexi58 member
    Yes I am aware of the Facebook page, thank you! My little brother has fragile x and he has definitely been a blessing! And when he was younger now almost 20! it was very very tough! Major tantrums , my whole family would leave anywhere we were in tears. He got over all of it though! He is a very well established young man with a full time job and just sweet as can be! I know if I am a carrier there are ways around conceiving a healthy baby. I would just much rather it be naturally. But you have to play with the cards you are dealt!
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  • ToastieSimonsToastieSimons member
    My DS1 was diagnosed with an x-linked intellectual disability, similar to fragile x, at 15 months, when I was 4 weeks pregnant.  I found out 8 weeks later that I am the carrier, however I am a de novo so my parents don't carry the gene.  Was your mom tested and found to be a carrier?  If not, your brother could have been a de novo mutation and then your chance is the same as anyone else's as being a carrier.
    To my boys:  I will love you for you Not for what you have done or what you will become I will love you for you I will give you the love The love that you never knew
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  • FlgBrideFlgBride member
    Hi there! I found out I was a carrier after my son was diagnosed with FXS. It's good that you are getting tested. That way you'll know if you need to be aware of the host of problems that carrier women might encounter. :)
    dx: Fragile X Syndrome
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  • Lexi58Lexi58 member
    Thank you! I love your encouragement! It's a scary process for sure.
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