Balancing hope.

Have you ever read, “Flowers for Algernon?” I remember reading it in middle school.

“The story is told through a series of journal entries written by the story’s protagonist, Charlie Gordon, a man with an IQ of 68 who works a menial job as a janitor in a factory. He is selected to undergo an experimental surgical technique to increase his intelligence. The technique had already been successfully tested on Algernon, a laboratory mouse. The surgery on Charlie is also a success and his IQ triples.

As Charlie’s intelligence peaks, Algernon suddenly declines — losing his increased intelligence and mental age, and dying shortly afterward, to be buried in a cheese box in Charlie’s backyard. Charlie discovers that his intelligence increase is also only temporary. He starts to experiment to find out the cause of the flaw in the experiment, which he calls the “Algernon-Gordon Effect”. Just when he finishes his experiments, his intelligence begins to degenerate, to such an extent that he becomes equally as unintelligent as he was before the experiment. Charlie is aware of, and pained by, what is happening to him as he loses his knowledge and his ability to read and write. He tries to get his old job as a janitor back, and tries to revert to normal but he cannot stand the pity from his co-workers, landlady, and Ms. Kinnian. Charlie states he plans to “go away” from New York and move to a new place. His last wish is that someone put flowers on Algernon’s grave.”

From Wikipedia

Can you guess what this does to me? Does it make you want to click on that little “X” up there in the top right? Would you rather pretend this isn’t happening?  Me too. Unfortunately, I can’t pretend.

There are those who are tired of reading about the end of this study. There are those who say I’m scaring people from participating in research. There are those who say that sharing anything but the most hopeful of stories, damages our community.

Here is the issue though…

Participating in research is already scary. As a parent, making the decision to experiment on my child for the greater good…it went against every mothering instinct in my body. And, yet, I did it. I made the choice for him, I gave over his body to science…for progress. To push fragile X research forward.

Dr. Berry-Kravis, who I love, recently said,

“Short of a science miracle (which I, Seaside and families had hoped for), we won’t get everything right the first time. We will stumble and we will fall and we have to just get right back up and be wiser from our mistakes and do it over and over again until it’s right. And every time it’s not just us that falls – it’s all of the families who are our partners. So it’s going to hurt and we feel bad that families have to go through this pain. But that is the nature of making progress in science and you must remember that without you we will not make it to the goal of developing new treatments. (We can’t ever prove it works without you) So we have to ask you to go through this process with us. It’s tiring – maybe even horrifying – to think of the persistence and resilience we will all need as partners to get through all the falls and scrapes as we eventually get over all the hurdles to the finish line!


from the NFXF
Call me naive, but I never truly believed that it would end like this. I thought we had to get through the double-blind portion and a brief titrating period and then we would be set. I am, clearly, a supporter of research…I asked last October, “Do you really want a cure?

“No study participants=No data=No cure!

All the lab results or money in the world won’t get us past this.”

It was true then and it is true now. If we stop participating there will never be a cure. The community cannot stop participating. But, we should have been openly talking about this part of participating in a trial. We should be going into these trials, not with just hope filled eyes but, with practicality and realistic expectations. If I had known that this might end this way, would I have still done it?

I don’t know. I can’t know because I based my decision on things that I only thought were true.

Do I regret it? That is an entirely different question and to that I say, not for one second. I know what is inside him now. What is breaking my heart is that we are going to lose it. We are going to lose it not because it isn’t safe – if it weren’t safe there would be no question I would be banging down the clinic door telling them to get him off it right now. We aren’t losing it because it doesn’t work – if it didn’t work I would have already moved on.  It is safe and it works and we are still losing it when we were told we wouldn’t lose it. How was I to know it was a possibility if we (FX community “we”) don’t ever talk about it?

So here we have a whole bunch of families, heartbroken over this sudden loss. If we had gone into this, believing that it would end…we would not be here. I would be sharing the Flowers for Algernon summary as an argument for more research. I would be arguing for more fragile X awareness. I would be telling you that although it breaks my heart to go through this, to put him through it, that it just means we need to keep moving forward.

Instead, while all of those things are true, I’m left fighting for my child. MY CHILD and not my community. I’m left standing here saying “It’s not fair! You told me we could keep it! GIVE IT BACK! I’m left feeling helpless, heartbroken and abandoned by people I thought were helping us. When I hear that I just need to keep moving, keep hoping, keep participating right now…I have only one response…one finger.

Is that fair to those who are saying…but they were allowed to end the trial or not every trial is successful? Probably not.

But was it fair to paint nothing but a rosy picture and make promises that weren’t entirely true? Definitely not. Going into this with such high hopes and unrealistic expectations has broken my trust.

So please…please…please…participate in research. What I want you to learn from my heartbreak is this…

We have long suspected that there is more inside our children than we were seeing…and IT IS TRUE. There is so much more in there just waiting to break out…but it won’t happen unless we make the sacrifices. We can’t just wait, we have to take risks.

But I also want you to learn this…

It is a risk. It is one worth taking but it is a risk. Go in with your eyes open and your hopes realistic. There is so much room for hope based on what we and other families saw.

I need to rebuild that hope within myself right now. That doesn’t mean “stop” it just means…be careful with your hopes and dreams because they’re precious and the loss has been almost unbearable.

42 thoughts on “Balancing hope.

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