My son Bryson is perfect.
But I long for him to be different.
Bryson has a rare genetic condition. Hidden deep within the 3.2 billion letters of his DNA, there’s a spelling mistake in one of the copies of his GRIN1 gene. Where the rest of us have a G, Bryson has an A.
As a result, he cannot walk, or talk, or feed himself.
He’s also the most loving little 12-year-old I could ever imagine. His smile envelops you with genuine warmth. His hugs are the purest form of love.
Like I said, he’s perfect.
But I want more. I want for Bryson to be able to walk like other kids, and talk like other kids.
I want a cure.
A year ago, I thought a cure for Bryson was unlikely. I figured that by the time researchers discovered one, my son would be all grown up and it would be too late for him.
But last summer, I found hope. A group of families of children with GRIN disorders met up in Toronto. We heard from scientists who told us that drug and biotech companies were investing tens of millions of dollars into studying the NMDA receptor — the part of the brain coded by GRIN genes.
Other scientists told us about research done on mice, which seems to show that if the GRIN1 mutation could be corrected, many of the symptoms could also be reversed — even in adults.
That was the day that I decided to get up each and every morning with a single purpose — to find a cure for Bryson.
The term “cure” is loaded. It suggests that there’s something wrong with Bryson; that something needs fixing; that he’s not perfect just as he is. I struggle with this. Who am I to say that “normal” is better? Who an I to say that the letter G in the 1,858th spot in the GRIN1 gene is better than the letter A?
And yet, I have this recurring dream every few weeks where Bryson and I are engaged in a conversation. It’s wonderful while it’s happening, but heartbreaking to wake up and realize it’s not real. I’m desperate to know what’s going on in Bryson’s mind, for him to be able to tell me how he’s feeling, and what he wants.
A couple weeks ago, my wife Laura and I saw Human Nature, a documentary about CRISPR, the revolutionary gene editing technology that could represent a cure for Bryson and countless other people living with incurable diseases. In a question-and-answer session after the talk, producer and legendary news anchor Dan Rather said he made the film because he thinks CRISPR has the potential to be the biggest news story he has ever covered, to change the world in unimaginable ways.
But what struck me most about the film were the words of one of the patients profiled in the film. David Sanchez is a U.S. teenager living with sickle cell anemia. People with the disease live in pain, and need regular treatments so their organs get enough red blood cells. A CRISPR-based cure for the sickle cell anemia is likely to be one of the first approved by the FDA.
But Sanchez says he’s not sure the treatment should be given to cure babies with the disorder. Instead, he suggests, doctors should wait until patients are able to decide for themselves if they want the treatment. Without the disease, he says, he wouldn’t be who he is today.
So how do I know what Bryson would want?
I don’t. Since he’s non verbal, he’s not able to tell me.
The other day I was speaking to a Denver-based neurologist who sees several patients with GRIN disorders. Even if CRISPR or drug therapies are eventually able to correct Bryson’s brain, he told me, it wouldn’t mean that he would be able to grow into a neurotypical adult.
He asked me what specifically I would want to see cured in Bryson. Perhaps, he suggested, I would want Bryson to tell me when he’s in pain, express his other desires, and be able to walk.
And all those things would be truly wonderful.
But I want more.
I told the doctor that the thing that scares me the most is what happens to Bryson when Laura and I aren’t around to look after him.
“Maybe I’m greedy, but I want him to be able to live independently,” I told the neurologist.
There was a long pause.
“That’d be good,” he told me, before trying to manage my expectations, gently hinting this might be too much to wish for.
For the past few months, I’ve been spending most of my time focused on understanding what’s going on in Bryson’s brain and connecting with doctors, researchers, biotech companies, and other parents of children with rare diseases in an attempt to do whatever I can to help drive a cure.
We’ve made huge strides. Researchers at the University of Toronto and the Hospital for Sick Children have used CRISPR to build a mouse with the exact same mutation as Bryson.
We’re working with researchers at Emory University in Atlanta to create lab-grown “mini brains,” using a remarkable technology through which mature cells are reverse-engineered and reprogrammed into neurons that will act much like the ones in Bryson’s brain.
These models should help us understand more about what is going on in Bryson’s brain, and to test potential cures such as CRISPR and drug-based therapies.
Will it be enough?
I don’t know. I’ve spoken with numerous doctors and researchers who are confident that in the next 10 to 20 years, there will be therapies that will dramatically improve the lives of people living with GRIN disorders.
The Denver-based neurologist believes these therapies will be administered to infants born with GRIN1, resulting in them having few, if any, adverse symptoms.
Others are even more optimistic, believing that these therapies will radically change the lives of adults living with GRIN, providing me with even more hope for Bryson and all the other beautiful people living with GRIN disorders.
All this hope fills the part of my soul that used to contain fear about Bryson’s future.
So I dream; I search; I push.
I push for that future day when Bryson will be perfect — just as he is today — but more safe, more secure, more able to look after himself when the day comes that Laura and I aren’t around to take care of him anymore.