STX 209 - An (almost final) Update

I've often heard fragile x described as having the sound of a vacuum in your head.  Consider going through life daily with that sound.  Attempting to speak.  To walk into large rooms full of people.  Imagine how difficult it would be and how easily you could become frustrated.  Imagine then that there was something you could do to shut that noise off.  That is how I look at arbaclofen - as an off switch for that constant noise in Ayden's head.  Now we have to turn that switch back on.  Devastated does not even begin to describe the emotions running through me.  Terrified.  Worried,  Overwhelmed.  Sadness.  And tears...lots of tears.

"We regret to inform you that Study 209FX303 [An Open-Label Extension Study to Evaluate the Safety, Tolerability, and Pharmacokinetics of STX209 (arbaclofen) in subjects with Fragile X Syndrome] is being terminated immediately.  The closure of the study is due to resource limitations at Seaside Theraputics, Inc., and is not related to any known safety issues in patients dosed with STX209."

You have seen our journey here.  From barely speaking, struggling socially, anxiety issues, and lack of self awareness to a little boy who was making friends, playing with those friends, playing with toys correctly, jumping into new situations with ease, going into loud places, laughing, talking.  TALKING.   What a difference six months and a little strawberry pill can make.

We were told the open label would be available until FDA approval (or lack thereof).  We were told 4-6 months notice if they were to ever stop the open label.  Things don't always go the way we expect though, and as of May 31 given just two weeks of notice, we have to begin the heartbreaking process of weaning Ayden from arbaclofen.

I took the night last night to sleep and hopefully feel better today.  I don't.  It's not fair.  The fact that this comes down to funding is just too much.   I'm hoping beyond anything else that we don't see regression.  That somehow this drug has made lasting connections that will continue.  That the drug only supplemented and helped what was already happening with Ayden developmentally.  I don't want to lose him into himself.  I just can't.  I won't.  We WILL find something.  We will do whatever we can to help him.  We always have and will continue to do so.  

We have other options for him.  We do know he needs something to help him with anxiety and focus.  We were at that point when we started the STX209 trial.  It was a good fit for us, we didn't have to wean off anything to start the trial because he wasn't on anything.   We knew this could happen.  It doesn't make this easier.

For now, I need to purge these raw, negative emotions.  Then, then I will look to tomorrow.

“You do not need to know precisely what is happening, or exactly where it is all going. What you need is to recognize the possibilities and challenges offered by the present moment, and to embrace them with courage, faith and hope.”  - Thomas Merton


Some other parent's blogs that were involved in the 209 trial are sharing their thoughts as well.  You may click on each person to read their thoughts.  I'll update as I see more.

Holly
Melissa
Kristin
Rachelle
Bonnie
Kristie

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Grief: The Silent RAWR

I'm so excited to be sharing the first of a series of guest posts by my friend Marie at All Things RAWR.  I have had the privilege of seeing her help and inspire so many people and just be a positive light in this world when the world certainly gave her a reason not to shine.  I asked her to write on a couple other topics related to [Fragile X] carriers, and she hit me with this first -- a post that quite literally brought me to tears.  I hope you are all as inspired and touched by her words as I am.

Grief. Loss. I am not a fan of those words for so many reasons, but they hold weight over us in a way that few other words are capable of. 

Searching for clovers and finding peace

Grief we feel, loss is what we almost had or had once upon a time. Beyond the letters themselves, there are few other words that can adequately describe to another human being what grief feels like. Wanting someone to understand grief without experiencing a loss is, in my humble opinion, darn near impossible. What is also striking is that the loss or reasons for grief can vary dramatically from person to person but the depth of pain, hurt and fear knows no bounds.

Whether you've lost a friend, a grandparent, a parent, a spouse, a child, a fur-baby or any other being or maybe even a job or the dream of a future, it hurts. It hurts a lot. It feels like your heart has literally been shattered into pieces, left in broken tatters. You wonder how you haven't died from a broken heart…yet. You wish you could go with them just so the pain will stop. You wish you could turn back time to when that future was possible. Each breath hurts. Each smile takes pain to crack. Some days you wonder how you will ever carry on. 

I say carry on because moving on is not possible. You will never forget, not for a day, rarely for a moment. Moving on, getting over it, letting it go, growing up, all of those mean words imply forgetting. You can't forget. Forgetting is not an option. Carrying on is. When you carry on, you carefully and compassionately pick up the pieces of your broken heart (oftentimes with help) and with a brave face, move into the next present moment. You carry your loss with you, in your heart. The scars on your heart make you stronger. If you allow it, the cracks in your heart let love sweep in and out like the ocean waves. 

Grief hits your insides like waves, sometimes a large wave tumbles over you when you least expect it. Sometimes you brace for impact only to find the wave barely crossing your toes. To lessen the waves of grief, there are things you can do. There are tools to help you find and pick up those broken heart pieces. 

When faced with a wall of grief and a shattered heart, it is time to mourn. Mourning is the work you do to process the grief. Mourning takes many outward forms: crying, writing, crafting, talking, sharing and so many more. Mourning is what saves us. 

You will mourn not only the past and the present but also the future. Honoring the future you thought you had by acknowledging the present you've been given requires a strength that feels impossible to summon at times, but is absolutely possible. 

If any of the above strikes a chord with your heart, I encourage you with all of mine and all of my RAWR to find a HEALTHY outlet for your grief. Many people turn to destructive behaviors which will only cause more pain and suffering. It takes strength to talk to a friend, go for a walk, cry, smile, write, sing, play, work, create, and mourn. 

Just when you think you can't go on, you can't possibly be strong enough to [insert mourning activity here], that is the moment to think of your loss. Feel the love you had for that person or dream. It is in that love that you will find the strength to carry on. 

I carry on. I am a survivor of grief. I mourn. I mourn on a daily basis. This post is my mourning. This post, and so many other moments of mourning are what saved me. What moments of mourning have or will save you? 

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