New Research findings were released earlier today from the Fragile X Conference including updated prevalence numbers as well as linking the Fragile X protein (FMRP1) to Autism. I don't even know what to say other than these numbers made my heart stop. On one hand, higher prevalence means higher exposure - which certainly leads to more funding for research. On the other hand, this isn't something I would ever want more people to have to live with. Here's the excerpts from the NFXF Twitter / FB feed.
From...
Thursday, July 26, 2012
Sunday, July 22, 2012
I Am One.
I am one.One in 260.One in 260 women are carriers of the Fragile X Premutation. To put that a bit in perspective...the average Facebook user has 245 friends. So, there is a very high chance someone you are friends with on Facebook is a Fragile X carrier. But have you ever heard of it? Approximately one-million Americans carry the Fragile X mutation, including approximately 100,000 with Fragile X Syndrome and are at risk for developing a Fragile X-associated Disorder.Could that one be you?Approximately 1 in...
Friday, July 13, 2012
Awareness Day: 2012
July 22 is a day that is very special to me for a couple of reasons. First, it's my anniversary, and each year with Mr Awesome is certainly a reason to celebrate!! Second, it is also National Fragile X Awareness Day. For those that are paying attention...you will know that Fragile X Syndrome is a genetic disorder that I am a carrier of and two of my kids (as well as countless number of other family members) are affected by. To help raise awareness, the National Fragile X Foundation has put together a Facebook event for this...
Thursday, July 12, 2012
Minocycline at Four Months
It's been a while since I posted anything about how the Minocycline was going with Ayden. We started at the end of March and now are mid-July - almost four months in.I can say with certainty that the mino is definitely helping Ayden, just not in ways we totally expected. In the middle of June, I somehow forgot to give him his medication for an entire week. Over the course of that week we began to notice behaviors emerging that we hadn't seen in a while. It didn't click until I realized exactly how long...
Wednesday, July 11, 2012
Potty Training Update
Potty Training Update Completed! *happy dance!*That's right. We toughed it out and have a potty-trained little boy! I am following a couple other Fragile X families going through potty training this summer, and let me just say we are blessed that Ayden did so well. I hope those others begin to have success like we did soon.We started on June 16, and by June 26 we had a couple accident-free days. We successfully went rustic camping for 4 days with only ONE accident and as of yesterday he rode the...
Friday, July 6, 2012
Five Years Ago
Five years ago
My life was forever changed.
My arms were forever opened.
My heart was forever filled.
For you, my dark eyed, firstborn, perfect little boy.
You stole my heart from the first time I heard yours.
You continue to steal it with each smile, each tear, each year.
Today is your day.
Today you are five.
Today I love you.
Forever.
Happy birthday, baby mine.
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