The End of STX209 for Us....And Now Everyone Else

I cannot say that I am liking the year 2013 very much.

I'm not superstitious about the number 13, but I'm starting to wonder if I should be.  We have not had much luck with anything this year so far.

Last week we finished up at Duke.  It was our sixth visit since February 5th.  Our trips were mostly great.  We got to spend time with my sister and brother-in-law in Chapel Hill.  Ian was a good traveler and after the first visit to the clinic, he was a good patient.  We LOVED the staff.  Every single one of them cared about Ian and his future.  Ian got more experience with parking decks and elevators and food courts and navigating large, unfamiliar buildings.  And last week we stayed at the hotel they provided, and that was another good experience for him that we had not had in a few years.

Ian got his own big bed at the hotel

Heading to our room at the clinic after lunch

Part of the Duke Hospital complex

But, on May 3rd, we found out Ian would not be participating in the open label extension after the study was over.  We had been told there was a good chance he wouldn't, but we went ahead with the study and hoped for the best.  I was, naturally, disappointed.  But, since it seemed like the study was going so well, I just kept the happy thought that the drug would be approved soon in my head and kept on.

Until yesterday.

It was announced that ALL the families that had children in the open label extension were going to be cut off from the medication in a couple of weeks due to financial problems with Seaside, the drug company that makes STX209.

This is a huge disappointment for the entire Fragile X community.  The Facebook posts and blog posts I read last night were heartbreaking.  One family found out on their son's birthday.  Another had been on it for 3 1/2 years and saw their son blossom and now, well, who knows?

It's all about money, and that will make a lot of people angry.  It makes me angry.  When you think about the way money is wasted on so many other things, it just kills me that something that improves life in such an amazing way is going away.

Or is it?

It's still early and I'm sure there will be more information coming in the days ahead.  And, this is a dedicated and hard-fighting group.  I know they will not give up.  The fund raising events will continue, the trips to Congress will go on.  There are other drug studies in the works and participation will continue.

So, I'm asking for your prayers.  And a few dollars wouldn't hurt either.  The National Fragile X Foundation does so much for us, so if you feel moved to do something concrete about this, please make a donation to them.  Or, the next time that I post a link to write a Member of Congress, please take a minute and do it.

I was pretty good about not crying about this until a few minutes ago when I read some of the responses to my Facebook post from last night.  We are blessed with so much loving support.  We are on a prayer list in Kentucky (thanks Jenny Beth!) and at least one of our friends is spreading the word on their Facebook pages.

We are down today, but not for long.

And 2013, I'm not going to let you make me superstitious!