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“Cure 4 ignorance-> Knowledge!”

Since: Feb 11

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#1
Jul 22, 2013
 

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JULY 22 is National FRAGILE X SYNDROME Awareness Day.

Fragile X is not widely known and understood... And I knew not one thing about this INHERITED, GENETIC DISORDER when it was thrown at me over 8 years ago. I was searching for answers. I needed to know why my child was struggling so hard with things that were suppose to come naturally, easy. I wanted to help my baby and I was stuck. He couldn't tell me what was wrong. He couldn't say no more than 5 words. Every one else's children were talking like crazy... But not my baby boy. He couldn't tell me when he hurt. He couldn't communicate with me his wants or needs. His frustration was only growing, becoming violent. And ALL I knew was that something just wasn't right. 

"G" was diagnosed with Fragile X Syndrome, full mutation at 200(+) repeats, February 14, 2005. He turned 2 on February 25. I was pregnant with "S". 
"S" was born July 20, 2005. Tested at 6 weeks, his diagnosis came at just 8 weeks of age. My test was done at the same time.. "S" has Fragile X pre-mutation at 140 repeats... I also have pre-mutation (my repeats are weird bc I'm a female)... 

I was so overwhelmed.
I was hurt. 
I didn't understand. 

I still get overwhelmed.
I still hurt.
I still don't understand it all.

BUT, I do know that FRAGILE X doesn't have to define us. We are different. We have our silly quirks and need for structure and routine. We have our bad days and then we have our extremely bad days. 

We have good days. These good days are what we live for. 

There is one thing for certain, Fragile X will never hold us back from loving and living for all our lives are worth... We learn every day. We take time to teach and to give... 

What we need the most... 
Is for all of you to spread the awareness, help others understand why we can't always come out to play... Why there are some public functions we just cannot do... Why we must leave early, arrive late, can't sit still, can't be quiet, can't stop asking questions.. The same ones, over and over. We have dr appts, blood work, therapy, special classes, long meetings, medical records ten inches thick... We have special requirements, special needs... 

Fragile X isn't going to hinder us, but we sometimes need a little extra time to prepare for outings, a little extra patience for questions, a little more solidity to plans made, a lot less rough housing and a ton more love.

Although, from the outside we may look as if we're an average, everyday Joe... We aren't. We have mutated chromosomes (kind of like the Teenage Mutant Ninja Turtles) ha! AND we are MUCH MORE than what meets the eye. 

So, PLEASE. Take time today, go to www.fragilex.org and educate yourself a little further. Learn about what makes us seem a little more awesome. 

FRAGILE X doesn't define us... But we sure do make it look good!:-)

July is Fragile X month... 
JULY 22 is National Fragile X awareness day... Challenge yourself... See if you can learn something you didn't know about my children, and even me. 
:-) 

Thanks to each and every one that has given support and love to us. 

<3 WE LOVE YOU ALL!! <3

Don't forget.:-)

www.fragilex.org

“light always defeats darkness”

Since: Jul 13

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#2
Jul 22, 2013
 

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Will always be there for you. I know a little of what you are talking about, but cannot begin to comtemplate what it means for you with two children. No, this is not pity. It is an honest statement about your courage strength and determination. No, not pity but love for who you are

“Cure 4 ignorance-> Knowledge!”

Since: Feb 11

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#3
Jul 22, 2013
 

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Thank you Magician! Your support, love and compassion, and others like you, make our battle easier to fight. We are Fragile... Not broken.. Not damaged.. Just different.:-)
Sportsman

Johnson City, TN

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#4
Jul 22, 2013
 

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MORE GApeach-TNflower DRAMA.

“light always defeats darkness”

Since: Jul 13

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#5
Jul 22, 2013
 

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Sportsman, I honestly try to be nice. But sometimes I just cannot help myself. That being said, I hope that when you go home today your mother runs out from underneath the porch and bites you. GAPEACH, IGNORE THIS HATER!!!!!!!!
Amos Moses

Jonesborough, TN

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#6
Jul 22, 2013
 
I Am The Magician wrote:
Sportsman, I honestly try to be nice. But sometimes I just cannot help myself. That being said, I hope that when you go home today your mother runs out from underneath the porch and bites you. GAPEACH, IGNORE THIS HATER!!!!!!!!
And chips her tooth!
Amos Moses

Johnson City, TN

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#7
Jul 22, 2013
 
My teeth are already rotted out.

“Cure 4 ignorance-> Knowledge!”

Since: Feb 11

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#8
Jul 22, 2013
 

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Thanks Magician and Amos!

But, I do have to say this...

Sportsman, this is not a definition of drama. This is a path in my life that was unexpected. I will not wish you ill thoughts. I simply do not have the time or energy to devote to your level of low.

Today is about raising awareness for Fragile X.
Fragile X Syndrome is the leading cause of intellectual disability and the leading known genetic cause of Autism.

While my most "affected" child, my oldest, has been diagnosed as functionally disabled and as of right now is surpassing that of the intellectually disabled... My youngest is in mainstream classes and is learning far more than was expected. Doctors have said that without pushing for answers in the early years of my first born's life, I would have two severly Autistic children with no communication skills at all, no language skills and certainly no social skills. While we still struggle with communication daily, they are both considered high functioning.

With mild and moderate autistic symptoms, PICA, seizure disorders, transitional axiety, sleep apnea, acid reflux, lactose intolerance and emotional placement disorder... We have a full plate... But we will still make time to say a prayer for you.

The best cure for ignorance is knowledge.
Learn more about Fragile X Syndrome @
www.fragilex.org

Have a great day!:-)

“light always defeats darkness”

Since: Jul 13

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#9
Jul 22, 2013
 

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You are so much a better person than I. No wonder you are adored by so many, and no surprise that so many haters attack you. Evil cannot stand goodness.

“See you in the funny papers...”

Since: Mar 13

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#11
Jul 22, 2013
 
You are in my thoughts, GaPeach...and it goes without saying, I'm here if you ever need anything :)

“Cure 4 ignorance-> Knowledge!”

Since: Feb 11

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#12
Jul 22, 2013
 

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Thanks Magician. I have my days when I'll fuss and curse with them but I've learned that these punk trolls are just that and today isn't about if they accept me or not. They are going to rebuke anything I say regardless of how much truth is to it. I knew it would happen when I posted this here, but even as they are being obnoxious toward me here, they may hide behind their computers and read up on some FXS. I do suspect that these trolls know me personally and will kiss a$$ if ever near.. But they think they're Bada$$e$ on Topix hiding behind their anonymous names. Until they have enough "balls" about them to say this stuff to my face... They're just like Dixie's pesky pecker gnats. ;-) 

I absolutely adore you and appreciate all of the times you have defended me and all of the rest. You have been a breath of fresh air in a world so full of hate. I'm sure your picture is beside awesome in the dictionary!!:-)

I didn't do this for a pity party. I did this for anyone willing to read this, to have a little insight into something that even I knew nothing about. And although it has answered many questions about my childhood, Even the doctors have admitted that they "skimmed over" it in med school but never had to KNOW more about it. The pediatrician that I saw as an infant and young toddler just retired completely from practice about 2 years ago... And in more than 30 years of practicing, he NEVER had the slightest of what Fragile X was. When I came to him with my children, he had to do his research. He would watch my children interact and shake his head with amazement that this is more common and even detectable with a blood test... And yet we are the only ones in his career that he ever had a dx of FXS. 

There is so much I could ramble on about... This is my life. My children are my life and how Fragile X effects them is what decides our every day. There is no cure. There are very few trial medications out that help with the social and behavioral as most as I can tell... And there are now a few more people that are wondering "WTH is Fragile X..." because of me.:-)

You are such a wonderful man and I consider you a protector. You certainly are good. Again, thank you!!:-)

And WW! You are the best! Thank you for your support and for being a friend.:-) <3

Since: Jan 11

Greeneville TN

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#13
Jul 22, 2013
 

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I don't care what you post or how serious a topic it is, there's always going to be some ahole jump in with their drivel.

To Sportsman, when you try to be a smartass and you're not smart, it just comes across as being an ass.

To GPTF, I admire your courage and your dedication to your babies. Blessings on your family.

“Cure 4 ignorance-> Knowledge!”

Since: Feb 11

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#14
Jul 22, 2013
 

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Thanks MystD!:-) means more than you may ever know!

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