The Words Of A Mother Desperate To Protect Her Child: Fragile X Part 2

Simple words can’t define the devastation I’m feeling with the announcement that the STX209 study for fragile X syndrome will end; words cannot define the fear that has now replaced my hopes for a better tomorrow.

We’ve been involved in the STX209 study since April 2009; we were one of the original 63 participants. Although the end study results did not demonstrate a significant improvement in irritability for the study group as a whole, for my son there was a SIGNIFICANT improvement. I doubt any of you have any firsthand knowledge of what it feels like to be battered by your own child; it’s something I wouldn’t wish on my worst enemy. I’ve lived through times where I’ve hidden bite marks, scratches and bruises because I knew, no matter what, I could love my son unconditionally but doubted others could do the same.

In our initial study, while it was double-blind, I knew when my son was on the medication and it was well documented by others because it coincided with my son’s Extended School Year (ESY). The progress report at the end of the ESY program said it all; my son improved in ELEVEN different areas, the majority of all goals addressing behavior. I simply didn’t cry, I sobbed tears of sheer joy.

During the last four years, my days have been filled with kisses, hugs and the ability for my son to demonstrate how much he loves me, something that was never measured in the study results. Yes, we’ve had the occasional minor meltdown but when you consider 95% of the time we don’t have any behavior issues at all, that is more than just amazing.

When we entered the study we were at a point when existing medications were ending an almost two-year honeymoon period. We were on 30 mgs of Abilify a day (dosed at 20 mg in the am and 10 mg in the late afternoon), 300 mg of Trilepal twice a day, and 50 mg of Zoloft once a day. All meds we were on were to address mood stabilization. We were at a point where I not only feared for my safety but for the safety of my son’s younger sisters. I feared that I would no longer be able to manage my son’s meltdowns, that I would no longer be able to care for my son. Because of STX209 we are now only on 10 mgs of Abilify, once a day, along with our STX209 dosage.

I used to write, it was a form of therapy for me and now it’s a record of my journey. I only pray I don’t have to live through my past words …

One of Those Days

Did you ever have one of those days,
when you didn’t know where to turn or what to do?

Did you ever have one of those days,
when no matter how hard you tried, you simply cried and cried?

Did you ever have one of those days,
when you simply couldn’t cope, you had lost all hope?

Did you ever have one of those days,
when you prayed and prayed for the wisdom to guide you on your way?

Did you ever have one of those days,
when you suddenly found yourself in uncontrollable grief, with no relief?

I want you to know, you are not alone,
and you share something with me that nobody else knows.

And as I sit with my heart and soul just weeping,
there is the sweet touch of someone who’s just two,
with three little words that will get me through, “Mommy, it’s okay”


Alone I am nothing.
I am but one, one of many.

Alone I am empty.
With a heart that seeks empathy.

Alone there is only fear.
Displayed in the form of many tears.

Alone there is only darkness.
There is nothing to take away the harshness.

Alone sorrow will consume me.
Alone is not where I want to be.

I’m truly having one of those days and feeling alone and helpless. Please tell me there is something I can do to change this outcome? I, for one, would be willing to pay to participate.

My family has participated in over 25 research studies primarily related to fragile X and/or autism and we’ve just enrolled in the Language and Communication study at UC Davis. With STX209 I have confidence my son can successfully journey from Michigan to California, without STX209 I’m not sure that’s possible. Sadly, I’ve just notified our contact at UC Davis that we will not be able to participate. I’m heartbroken – this was going to be another amazing venture with Austin.

Without STX209 our life as a whole may take a drastic turn for the worse, I fear we may regress and I’ll no longer be able to provide for him in our home environment. Our dreams of placing him in an environment in which he’ll be able to live independently in the community, with supports, five years from now will be shattered. “Shattered” is as close a word as any to define the impact on my family’s life if we take STX209 out of the picture.

Written by
Sally Nantais

To learn more about Fragile X Syndrome visit the National Fragile X Foundation at or sign the Fragile X Petition @

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One Response

  1. Angie Grantman May 20, 2013

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