Will and I have a friend who has a child with Fragile X Syndrome. Candidly, I was fairly unfamiliar with it until I met her and read some of her Facebook posts and occasional blogs. For those of you not in the know, the quick and dirty Wikipedia definition is:
For those of you IN the know, I do recognize that a wiki definition cannot possible provide an adequate explanation, so please don’t bristle up at me. I’m just trying to make sure the folks at home have some basics so that they can follow along.
This woman rocks. While I don’t know her as well as my husband does, I can say with some authority that she has never expressed anything but a positive energy and outlook in my presence, whether in person or through electronic media. She has what I can only describe as a cheerful and tenacious soul. She has 2 kids, works full time, and is a VERY active advocate for other families affected by Fragile X. I admire her.
She and her son have been involved with a drug trial for his syndrome. She regularly takes him across state lines so that he canvisit the clinicians and receive his medication. From her reports, they have been seeing dazzling results, particularly in the realm of speech and language. When she speaks about her boy, you just feel the pride and the relief that this magic stuff, STX 209, is working.
I saw a Facebook post from her last night that truly broke my heart. Without warning, the trial is over. Done. No more STX 209. Thank you, you may go. This tentative hope that this medication brought to her son and her family (along with countless other families out there) has been taken away. The speculation is that there is no longer adequate funding to continue.
I am not an expert on this stuff. I have read this friend’s posts as well as others she’s linked to over the past year and in many cases the treatment has produced results that can only be described as remarkable. Sure. As a science-based person I acknowledge that this is anecdotal “evidence” that I’m spewing. But the shock and sadness and rage that these families are experiencing is very much real. You don’t need data to back it up.
I have a government job. I’m fairly familiar with budget cuts and the now-tired concept of “doing more with less.” But to cut something like this? Medication given to kids? Come on. I have no idea what the twisted tale of funding looks like in these cases. I’m sure it’s probably a hodge-podge of government and private sources. A quick Google of STX 209 shows that statistically this stuff was working for many of the patients it was given to.
I don’t know what my point is. As a mother, I can’t imagine what it’s like to have a child who needs help, have that help briefly offered, see that help in action, and then have it cruelly snatched away. This stuff is there. It works. Why stop it now? Maybe I’m just gnashing my teeth at a nation that would do this to families but spent $750 million on the new US Embassy building in Baghdad (among other wasteful or downright stupid ways to blow large sums of money). Maybe I’m hoping one of you out there knows someone that can do something. If you do, how about a well-placed phone call or email?