Wednesday, May 15, 2013

boy o boy o boy.... my boy. STX209

left field- it came out of left field.   An email informing us that the STX209 drug trial that Abraham has been participating in for the last year is ending... now.  right now.  secondary to funding.  

From what I can gather- there were 2 arms of this study, 1 for Fragile X, 1 for Autism.  The Autism study had loads and loads of participants, loads of backers... and poor results.  Because there was no proof that the arbaclofen made any sort of clinical difference in the lives of these children, the backers pulled their funding.  The compilation of data for the FX arm is not yet completed... preliminary information tells a completely different story- progress, speech, cognition, positive changes in every day life.  

Fragile X, Fragile X, Fragile X.... you still haven't heard of it?  Apparently neither has anyone else.  Fragile X is genetic.  It's molecular in nature.  It's caused by an expansion or repeat of our DNA sequence...  and this drug seemed to abate some of the symptoms- social anxiety, fearfulness, panic.... 

This is a copy of my post from April 11th, 2013

Tonight's spring concert was AMAZING!!! My handsome Bo and his Kindergarten class sang about being green, while Abe and his Second grade class sang about the Ocean and Played Xylophones 
 Last year, there is NO WAY in the world that my big kid would have been able to 1. leave FOR school after 630 pm 2. Get out of the car at SCHOOL when it's almost dark outside 3. Be fired up and excited to be in the classroom with his peers in the NIGHT TIME 4. WAIT in the hallway 5. Stand on the risers with his peers and use his 'go talk' device to participate in the concert 6. Play a XYLOPHONE with his amazing aide and peers in front of a packed gym  7. Wait patiently while the kids in the other 2nd grade took their turn on the xylophones 8. Make it home HAPPY and through the entire process without a MELT DOWN!!! I know i've said it about 5 billion times in the last week... you know why we work so hard with ALL of our children? Why we try EVERYTHING no matter how many times we may have failed at it before???? Why we continue to believe that every single cent we can contribute to research and education makes a difference??? This. this is why. xo

So.   I was sad... we've made huge strides this year- we've changed communication devices (advancing to a device that allows for more spontaneous speech productions), we've participated in many many social events that we weren't able to before- a packed gymnasium for a basketball game, chuck-e-cheese for a birthday party, Grocery shopping on a Saturday morning....  I could go on.  I could stay sad.  I could worry.  

Here's my plan 

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