Yesterday, Caleb turned 9. He had a party at school to celebrate and he loved it. Yesterday, I was looking at pictures of my smiling happy boy with his friends. Yesterday, for the first time, I didn’t meet one of his birthdays with a feeling of dread. Yesterday, I was not scared that another year had passed and that we were still stuck in Holland.
And then I learned that the extended trial of STX 209 is over. Done. We had heard rumors of money troubles but we all hoped for a solution and some advance notice. We didn’t get either.
I woke up this morning hoping that I was having another of those awful dreams I’ve been plagued with lately. The dreams where people are trying to hurt or kill me, after all, you couldn’t find a better way to hurt me than through my child…but it’s not a bad dream. I stood crying at the counter this morning setting out Caleb’s breakfast, which is always accompanied by a spoon of applesauce and his morning meds, knowing that we’re one dose closer to the end.
I would like to say I’m angry and ready to fight but the truth is, I’m lost. I don’t even know where to begin. I’m wracking my brain right now trying to find the answer. You cannot turn around in this town without bumping into either a Dunkin’ Donuts or a biotech firm. There are pharmaceutical companies of all sorts here and I’ve worked with many of them over the years as they’ve sought round after round of financing to keep afloat. There are private equity firms of all sorts here and, again, I’ve worked with many of them over the years as they provided round after round of financing to keep businesses like Seaside afloat. I’ve seen some of the most improbable saves and some of the most improbable failures. I know nothing in this business is guaranteed, there’s a lot of money here because it’s expensive work. Changing the world takes lots and lots of money.
But I’ve come up with nothing except this…there is someone out there who has the answer. They have the money and the heart to be our hero, we just need to find them. Please, please help me find them. Write to your members of congress, they know people! Tell your neighbor, your minister, your local paper…the more people we have looking the sooner we will find the one we need. I refuse, refuse, to believe that this is as far as the story goes. I’ve never expected a fairy tale ending, but this…this defies logic. We are almost there. In the face of incredible odds, Seaside has gotten us to the point where we can see the goal line…now we need that one person to stand up and either clear the way or give them a nice big push from behind.
One person. That’s it…please help me find that person. Please, if you have the resources to be that person…take your chance to be a hero.
We started our journey with this quote…
Oh, the Places You’ll Go!
by Dr. SeussYou will come to a place where the streets are not marked.
Some windows are lighted. But mostly they’re darked.
A place you could sprain both your elbow and chin!
Do you dare to stay out? Do you dare to go in?
How much can you lose? How much can you win?And IF you go in, should you turn left or right…
or right-and-three-quarters? Or, maybe, not quite?
Or go around back and sneak in from behind?
Simple it’s not, I’m afraid you will find,
for a mind-maker-upper to make up his mind.You can get so confused
that you’ll start in to race
down long wiggled roads at a break-necking pace
and grind on for miles across weirdish wild space,
headed, I fear, toward a most useless place.
We may be lost in streets that are not marked just now but we won’t stay here long. I promised Caleb we were leaving The Waiting Place last October and I am not breaking that promise. Even if this isn’t the way we ultimately get there, we are done waiting. Done.
If you want to know what STX 209 has meant for us, read these posts: STX 209 – Phase II Trial
Was Caleb on the study – it’s sucks, for all the kids involved
Caleb was, yes.
🙁
Melissa Welin I loveeee your blog.. it’s wonderful… how did you make it? I have seen blogs but yours is niceee
I’m not one for self promotion, this is for my son. We need a #fragileXhero, please help. http://t.co/ViozP8mcJ7
Thankis, Lys…it’s a self hosted WordPress blog using a WordPress Theme. Self-hosted is way more flexible than the free sites so I have more control over how it looks.
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RT @BasicallyFX: I’m not one for self promotion, this is for my son. We need a #fragileXhero, please help. http://t.co/ViozP8mcJ7
RT @BasicallyFX: Today, we start again.: http://t.co/xjyefO9VsO #fragileX
Ahhh nice… I have used wordpress before and couldnt learn how to use it very well… for me it was hard to use.. 🙁 but yours is lovely.. great job 🙂
It helps to have a web designer in the house! I’ve had to do lots and lots of research though to keep it running the way I want.
It does help ! Lol but great job to you both… Caleb is a cutie!
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Eric and Melissa, I am so sorry to hear about the trial they are ending!!!! It doesn’t seem right what is happening 🙁 keep strong!
Thanks, Cheryl. If you win the lotto, keep us in mind!
IrenenLorenzo SanMiguel liked this on Facebook.
I’m so sorry for you, Eric and Caleb. I promise I will do what I can in my own community to help you and the other families in the FX community affected by this trial end. I believe if we raise enough attention to this issue SOMETHING will be done.
Thank you, Jamie!
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RT @basicallyfx: I’m not one for self promotion, this is for my son. We need a #fragileXhero, please help. http://t.co/25E0rzF7xI #FragileX
HOW CAN THEY? ANY PROBLEMS WIH THIS DRUG? STOP!!!!! AND HELP THESE KIDS
We are devastated
@BasicallyFX: Today, we start again http://t.co/tl9v9LbMVs #fragileX @Roche Please reconsider, support fragile X and autism families! #share
RT @lylee4791: @BasicallyFX: Today, we start again http://t.co/tl9v9LbMVs #fragileX @Roche Please reconsider, support fragile X and autism …
RT @BasicallyFX: Today, we start again.: http://t.co/xjyefO9VsO #fragileX @Roche Please reconsider, support fragile X and autism families!
RT @BasicallyFX: Today, we start again.: http://t.co/xjyefO9VsO #fragileX @Roche Please reconsider, support fragile X and autism families!
RT @BasicallyFX: Today, we start again.: http://t.co/xjyefO9VsO #fragileX @Roche Please reconsider, support fragile X and autism families!