In CBC podcast, a dad searches for a cure that would allow his son to communicate
By Louise Kinross
Unlocking Bryson's Brain is a CBC podcast launching Tuesday that follows one Toronto family's search for therapies or a cure for their son Bryson, who has a rare genetic disorder called GRIN. The podcast was written and hosted by Bryson's dad Keith McArthur. Many of us know Bryson's mother, Laura Williams, who was a beloved member and leader of Holland Bloorview's client- and family- integrated team for many years. We spoke to Keith about Bryson, the themes he explored in eight episodes, and some of the surprises along the way.
BLOOM: Why did you want to make this podcast?
Keith McArthur: I got the idea in the summer of 2018, and it was actually at Holland Bloorview. We held a family conference there where GRIN disorder families from around the world came and we brought in researchers from the University of Toronto and SickKids.
It was the first time I heard the message that the science was evolving so quickly that there was a chance that there could be therapies that would make a big difference in our kids' lives. That moment changed the way I thought about Bryson's future and his disease, and I decided to set everything aside and focus my life on trying to pursue this research for therapies or a cure.
I thought it would be great to bring my recorder along and record these meetings with scientists and researchers, and that potentially it would be a great story to share with other people.
BLOOM: I listened to the first episode, which I loved, and you say you want to believe in a miracle. What would a miracle for Bryson look like for you?
Keith McArthur: For a long time, as I think a lot of rare-disease parents go through, you mourn the typical kid you thought you were going to get. But then you come to a place where you're grateful for the kid that you got instead. I'm there now with Bryson. I think Bryson is perfect.
But at the same time, his life is hard. He can't communicate what he wants, and he has these violent, seizure-like episodes that are terrible for him. To get around, he needs us to push his wheelchair or help him walk, so there's a lot of freedom that he doesn't have.
I guess to me a miracle would be any range of things that could help make his life easier, so he could communicate and set his own plans for what he wants to do, and be able to tell his own story.
BLOOM: Your podcast has eight episodes. I've listened to the first one, where you talk about learning that Bryson wasn't developing typically, and you interview Laura and your other son Connor. What are some of the other episodes about?
Keith McArthur: The second episode is about getting a diagnosis and what that means to us. For the first time, we could connect with other families, and it changed our lives in a lot of ways. In the third episode, we get into gene-editing and CRISPR in particular. In the fourth episode, we meet other GRIN families, and that episode goes back and forth to the time I had my own health problems and was going through kidney failure, and the process of getting a transplant when my sister donated a kidney.
The fifth episode gets into the science. When we had the conference at Holland Bloorview, researchers offered to make a mouse with Bryson's exact variant, and to make a mini-brain with his DNA. We looked at new things scientists can do to come up with therapies.
The sixth episode is about the controversy around the word 'cure' in the disability community, and I interviewed disability activists Tom Shakespeare and Eli Clare. In episode seven, Laura and I spend a week in Boston, which is the life sciences and rare diseases apex of the world, and talk to researchers and biotech companies.
In the final episode, we get test results back and learn a lot that we didn't know about Bryson's disease. We look forward to two versions of the future.
In one, we know Bryson will continue to progress at a slow pace, as he does now. In the other, there are some therapies that can make a pretty big difference for him, and his ability to communicate or be mobile in some way.
BLOOM: Tell us a bit about Bryson.
Keith McArthur: Bryson is 13 now. When he was a couple of months old, we noticed something was different about him. We went to get his baby pictures done, and he couldn't hold his head up the way the photographer wanted him to. We came to realize his life would be very different. He's non-verbal. He uses a wheelchair and we need to push him. His brain development is probably around 12 months of age.
All that said, he's a super happy, super social little guy who loves being around other people. He loves going to school, and he had a really hard time at the start of the coronavirus lockdown, when he had to stay home and couldn't see his friends.
Bryson likes going to Blue Jays games and watching them with me on TV. Most of the time he's happy and social, and we think he understands more of what's going on than he can communicate. There are times when we're in the car and Laura or Connor will make a joke, and Bryson will laugh before anyone else.
The most challenging thing for him is he has violent, seizure-like episodes that have never been confirmed on an EEG. He can be quite violent during these, and hurt himself.
BLOOM: Nine years after Bryson was born, and after tons of testing, you got a diagnosis. Can you describe GRIN in simple terms?
Keith McArthur: There are seven GRIN genes that come together to create the NMDA receptor, which is an important piece of the brain neuron that helps the brain to learn and form memories. In kids with GRIN, one of those genes is changed so that the protein doesn't work properly. That causes challenges with learning and memory. A lot of the kids also have seizures, and others have low muscle-tone and gastrointestinal issues.
BLOOM: It's usually a random genetic change, which is interesting because Laura talks about how she was repeatedly asked questions about her pregnancy and delivery, which led her to feel she had done something wrong.
Keith McArthur: At every appointment we were asked the same set of questions, and a lot were about Bryson's birth, and I think that takes a particular toll on the mother.
BLOOM: You talk about other ways that the health system made your life more, instead of less, difficult.
Keith McArthur: Often there were very long waits for very short appointments. There were some clinics where you'd wait for three hours for a 15-minute visit.
One time we were panicking, because we thought we might be late, but then we arrived just in time. As we pulled into the parking lot, we could see the neurologist we were supposed to meet leaving, in his running gear. Then we went inside and waited for three hours.
BLOOM: Unbelievable. You talk about how agonizing the testing process was, where you'd be waiting months for results, and you wouldn't get call-backs.
Keith McArthur: I think people in the medical system don't realize that every test has a huge impact on parents. We do go and Google the illness that's being tested for, and if you're waiting three months to get results, you're fearing that this illness that could kill your kid might be the one she has.
BLOOM: In the first episode, you interview Laura and your son Connor. But Bryson can't tell his own story, and you question whether you should be telling it. Did you resolve that dilemma?
Keith McArthur: I guess it's always something at the back of my mind. In episode six, where I talk with Tom Shakespeare and Eli Clare, I was able to feel better about the process, because I believe what I'm doing is in Bryson's best interest. If he can't tell his own story, if I'm doing it for him, then that's okay. Kids who are non-verbal need their parents to communicate their wants and needs. To a large extent, I'm doing it in a much more public forum. But if that can help us get closer to therapies that could help him and other kids with GRIN disorders, then it's something that I hope Bryson would think is the right thing to do.
I did ask Tom and Eli about how to tell Bryson's story in an ethical way, and they shared a couple of things. As much as possible, we need to make sure Bryson has a voice in his own future. There's a lot he can't tell us, but there's a lot Bryson can communicate to Laura and I, just by the way he blinks or smiles. And we need to explain things to him as we're going through them.
The other piece is the ethics of the cost of these cures. They cost potentially billions of dollars, and resources in heath care are limited. So there's a difficult ethical decision around spending money on a disease that affects a few thousand people, like GRIN, as opposed to something that affects millions of people.
BLOOM: The word cure is quite fraught in the disability community, because it suggests a person needs to be changed. There's a sense that it's all or nothing: Either the person is fixed, or in some way they're lacking.
Keith McArthur: I know it can't only be about changing the individual, but about changing the world as well. It's a really good question.
If I'm honest, what I'm really hoping for is something that is like a real cure, something like gene editing that can go in and change the DNA in Bryson's brain so that he becomes closer to neurotypical. Because that will allow him to communicate with us and express when he's in pain, and maybe it would enable him to get around by self-piloting his wheelchair, or walking. At the same time, I know that for him that may be unlikely.
I helped to co-found a U.S.-based charity called CureGRIN, and we talk about our goal being to find therapies and cures. There are scientists in the podcast who think that in 15 years it will be possible to know if a kid has these gene changes at birth, and to do some kind of gene therapy that would allow them to grow up as a neurotypical kid. That may not be possible for Bryson and older kids.
BLOOM: Do you fear that a treatment like gene editing could change something essential about Bryson as a person, as an unintended side effect?
Keith McArthur: It's something Laura and I have talked about. But on balance, for us, it comes down to the fear of who is going to take care of Bryson when we're not around, and he can't communicate if someone is hurting him, or if he's sick? If he doesn't have any freedom to make his own choices, I worry that life is going to be very difficult for him when Laura and I can't take care of him.
BLOOM: What medical interventions do you look at in the podcast?
Keith McArthur: We talk about gene editing and drugs that can target the NMDA receptor and help to balance it out.
BLOOM: What was the greatest challenge of putting the podcast together?
Keith McArthur: Probably just the last few weeks and having to finish it up from home, because of coronavirus. I don't have the same technology or sound-proofed booth here.
BLOOM: What about emotionally?
Keith McArthur: The most difficult part emotionally was that we have hours and hours of home video, and I used some of the sound from those in the podcast.
I spent days watching those, and especially watching the parts before we knew anything was different with Bryson, where we thought we had this 'perfect' family. But in the back of my mind, knowing what's coming, and how much everything changes, and how hard all of the feelings were initially, brought a lot of things back.
BLOOM: What do you hope listeners take away?
Keith McArthur: I think a lot of other rare-disease parents will be listening. One of the people I talked to in the last episode is another GRIN mom who just got her child's diagnosis, and for her it's so raw and painful. It reminded me, when talking to her, of how far Laura and I have come, in terms of accepting and understanding this life that we didn't expect. I hope the podcast can give motivation to people who are just starting to come to grips with their child's serious illness or rare disease.
The second piece is helping people to have hope. We're at this amazing point in time for life sciences, where it's possible to think a lot of diseases that we considered incurable can be cured. I'm thinking of the trials using CRISPR for sickle cell anemia, and some of the amazing therapies for spinal muscular atrophy. We're going to see a lot more of that.
BLOOM: Did putting the podcast together change your thinking in any way? Were there any surprises along the way?
Keith McArthur: One surprise, or thing I wasn't thinking about at the start, was how nuanced the idea of cure can be, and how it's controversial for people in the disabled community.
Another thing that surprised me was that for the first 12 years of Bryson's life, we only talked to doctors about his disease. We had some amazing experiences, and other very challenging experiences.
In the last couple of years I've been talking to researchers, and I've been surprised at how different an experience that is, and how much more willing they are to try to help. I've got so much respect for scientists who are working on rare diseases.
Our experience with most doctors was that you see them for a few minutes when you have an appointment, and there's not a lot of time for them to understand the broader picture of who Bryson is, and the science of what's going on in his brain. The potential solutions are limited.
But talking to researchers, whether it's at a university or hospital or a private pharma or biotech company, they're interested in taking a lot more time to learn about Bryson and the disease. That was a surprise to me.
BLOOM: Do you have a favourite episode?
Keith McArthur: The last one.
CureGRIN, which Keith McArthur co-founded, has raised about US$150,000 for research. Recently it was awarded a US$450,000 grant from the Chan Zuckerberg Initiative.
