Clouds, May 2010

Clouds, May 2010

Tuesday, June 4, 2013

you. can. help.

So, it's Tuesday & I'm already having one of those weeks.

Two mornings in a row & my child has had colossal meltdowns seemingly out of nowhere. That's the only part that is consistent...

Usually when things are particularly bad, it's the least-expected. When I think back to the times when I have seen Hayden's behavior at its absolute worst, those are the times when the antecedents are the toughest to identify.

I will replay the minutes & hours in my mind before the incident happened & try to figure out triggers. Usually I am unable to pinpoint the cause.

But because my son has fragile x & therefore his body is not producing a certain protein that it needs for normal development & functioning... & one of the vital organs in his body which desperately needs this protein, is his brain... then maybe I should quit being so damn surprised.

Most people with fragile x will end up with a treatment regimen of medications to help with symptoms of fragile x, but nothing that is specifically indicated for it. Just to name a few examples, these symptoms can include attention deficit, hyperactivity, anxiety, depression, social anxiety & other related challenges.

There are various clinical trials in progress but when seeking FDA approval, because only one symptom can really be targeted at a time, not everyone who can benefit from the medicine will necessarily qualify for the study. In addition, each trial is targeted for certain age groups, & treatment centers are only in specific locations throughout the country.

Hayden is not presently enrolled in any of the current clinical studies. The one that we were hoping to get him enrolled in, he ended up not qualifying for because the target symptom of the trial is not something that he exhibits.

That trial was also the one currently closest to achieving FDA approval. If you have been following my posts, then you already know in recent weeks the study abruptly came to a halt-- not due to safety issues-- but because of funding.

In addition to signing this petition (the link will open in a separate window), you can also help by sharing the fx community stories in whatever capacity you can... with friends, family, on social media, or in any other media format... the more attention, the better.

You can start by sharing this link ... it's a newly-created site, solely dedicated to the families of the children who have greatly benefited from  the STX209 Clinical Trial.

And here is another phenomenal article-- just published-- & you can learn all about Parker & Allison Roos from Illinois. Their story is shared through the perspective of their tireless mom, Holly, & even though it's the story of one family... it's actually the same story of many, many families throughout the country.

The article includes a heartwarming (yet equally heartbreaking) video, as well as photos & other insightful information.

Please share any or all of these links. Not just for the kids who have been on the trial all this time & have had such incredible improvements, but for all of the other kids, too-- kids like Hayden who were patiently waiting their turn, pending the FDA approval.
This affects all of us... even people whose kids are not yet diagnosed.

You really can help. So please do.


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