Bryce Ransom (Mobile, AL)

Blurry visions of traffic lights, uncontrollable sobbing, and a lifetime of grief and guilt is was I recall while driving home after receiving Bryce’s FX diagnosis 4 years ago. Bryce would be one year old within a couple of days and this was supposed to be celebratory milestone. Indeed it was a milestone, but far from celebratory.

This was my first time of learning about FX. Almost instantly I began looking for  answers, searching for information about this syndrome that doctors pretty much knew very little about. His neurologist had already given him a very poor prognosis of achieving anything in life and I was supposed to accept that this is the way it was and the way it was going to be. I didn’t. I couldn’t. And I won’t.

Bryce had his challenges. He didn’t began crawling until 13 months, walking at 24 months, and really communicating until he was almost 3 years old. As Bryce continued to progress slowly, I began to hear about promising new research and medicines coming down the pipeline that could help Bryce developmentally and cognitively. I began following FX families that were enrolling their children in clinical trials and hearing about the amazing results that were seeing in their children, particularly as it related to communication. I had hoped for and wanted the same thing for Bryce.

I can recall this past year anticipating Bryce’s 5^th birthday so that he could meet the enrollment age for the Seaside Trial being conducted at Emory University. Bryce turned 5 on October 16, 2012 and we had our initial appointment at Emory on Oct. 22, 2012! We were ready, thrilled, and excited. We knew that this medicine could help Bryce and that’s all any parent would ever want. Bryce met all qualifications and during the screening process exhibited significantly high levels of anxiety. I can recall having to do the EKG several times because his heart rate was through the roof.  On any normal day, Bryce exhibited a high degree of anxiety which limited his ability to communicate.

During the trial, we knew that Bryce had to be on the medication. His behavior was completely different. He became quite the “chatter box”, talking to everyone-even complete strangers in the store! He began to shake people’s hands after church, mimicking behavior that he observed. He also was more tolerable of being separated from me and wanted  to hang around other kids and engage in some of the same activities. His teachers even commented on how he had become more social at school.

Once the trial ended, and we began to titrate him off the medication- we saw an increase in hand biting, collar chewing, and aggression. In January, we were able to put him on the open label trial and knew that he was receiving the medication. Once we got achieved the right dosage (20 mg/day) we began to see the remarkable results that we had observed during the trial.  I must say, though, that with the increased communication, Bryce also became more “daring” and often tested us to see just how much he could get away with doing or NOT doing! I guess this is typical child-like behavior, however, without any medication he didn’t dare to find out!

All of the Drs at Emory had commented on how much Bryce’s anxiety had been lowered through medication and were impressed by the increased ability to communicate. Things were going smoothly and looking better for Bryce and then out of the blue, I find out via Facebook that the study is over that the funding had been cut and that Bryce could no longer take the medication that was helping him. There was no warning, no letter, no apology (Seaside), NOTHING. It was heartbreaking…literally heart breaking! I knew that stopping this medication would mean Bryce would suffer and that’s extremely frustrating. It was done in a matter of fact way, almost in the same way, the doctor gave me his prognosis. As though I am just supposed to accept it. I don’t.  I won’t. I haven’t even begun to titrate him off the medicine yet. I am not sure what to expect or how I am going to feel if I have to start that process. I just haven’t accepted it yet.

I believe that something can be done to support all of the FX families affected by this decision. I know that there is something or someone out there that has enough power to rectify this so that families and children don’t have to suffer. This may not have been the “magic” pill that fixed everything , but it did offer some hope….it was my hope…It still is my hope.