High school grads face uncertain future as they prepare for university amid pandemic

Guests: Brianna Burke, Scott Sharma, Antonietta Gutierrez

SOUNDCLIP

VOICE 1: Not every generation has the chance to save lives, but we did by staying at home and sacrificing our grad to keep our communities safe.

VOICE 2: It was as if the clock stopped ticking and all our exciting plans for the school year shattered before our eyes. From walking to our next class to having a laugh with friends in the cafeteria to staying six feet apart. From enjoying the last few moments as seniors to being quarantined at home. It doesn't feel right. That's it.

MK: Well, I'm sure it didn't feel quite right for many high schoolers graduating this year. And just like those two valedictorians from Winnipeg, many are faced with taking their next big steps in life against the backdrop of this pandemic. From home learning to cancelled proms and decisions on post-secondary education in the fall, the class of 2020 is having a very different coming of age moment. So we're checking in with a few grads preparing for university in September. First up from Fort McMurray is.

SOUNDCLIP

VOICE 1: Brianna Burke. Her favourite quote, "for long you live and how you fly and smiles you'll give and tears you'll cry. Pink Floyd. Brianna is also the recipient of the Northwinds Marching Band Scholarship and a member of Citizenship Award. Congratulations Brianna. Come on up.

MK: Brianna Burke graduated in an outdoor drive-in ceremony where ten students were allowed to attend at once. She'll be studying English education and playing hockey at McKendree University in Illinois this fall. Brianna, good morning.

BRIANNA BURKE: Good morning, Mark. How are you?

MK: I'm doing very well today. And I'm trying to picture this drive in ceremony that you had graduation. Tell me about that. What was that like?

BRIANNA BURKE: You know, it was very interesting. I think the staff did such a good job with, you know, preparing this special moment for us to the best of their abilities. They had this backdrop for us with a bunch of decorations and they had these designated parking spots for our families. And then all the staff were there watching either from the windows of the school or some of them were there working the technical side of it or taking photos.

MK: Well, I mean, clearly wasn't what you expected in the fall when you were going into your last year, but it sounds like it was a special moment for you.

BRIANNA BURKE: Yeah, for sure.

MK: That's great. That's honour, because it is a special moment when you finish high school and also a special moment when you try to decide what am I going to do next? So you're going to go to university in Illinois. Were you concerned at any point? You know, doubting maybe this isn't a good idea for me to go to university. Were you considering deferring a year at any point?

BRIANNA BURKE: I would be lying if I said it hadn't crossed my mind, you know, just with everything going on. But in the end, this is what I want to do. I've always wanted to go down to whatever university and play hockey. And I was so glad to find this one that suited all my needs. I knew that if I did take the proper health measures and safety measures, that I would stay safe. To the best of my ability, I did a couple of times think, would this be a danger to myself or others? But then again, I thought as long as I stay safe and I follow the guidelines put in place both by the hockey program and the school itself, then I should be OK.

MK: Yeah. Well, tell me a little about those guidelines. I mean, what do you know? I mean, because I'm picturing it on two levels. There's both you in class and then there's both you on the ice as well. So what do you know about how things are gonna be different for you in this first year of university?

BRIANNA BURKE: You know, there are so many moving pieces, but I think from what I know, we do have to wear masks. Masks are mandatory for our classes. It sounds like some of it's a kind of hybrid sort of situation. So some of our classes are online and some of them are in person, such as labs or I'm not sure what other classes are going to be in person. We haven't found that out yet.

MK: Right. And on the ice, how does that work?

BRIANNA BURKE: I know that we're allowed to practise. I actually don't know about games in the fall for sure. I don't really know how that'll work, but I do know that we're allowed to practise in the fall. So, I mean, that'll be good.

MK: What about residents? Because clearly, you're away from home. You're going to be living in residence, I'm assuming. How is that going to work? Will you have a roommate or what have they told you?

BRIANNA BURKE: I actually reached out to the residency hall at the beginning of the summer and I asked if I would be getting a roommate because they hadn't assigned me one yet. And they said you will most likely get a roommate later in the summer. And I'm not sure if that will still be true because it was a couple months ago. And I don't know if it's possible to not have a roommate just because there is only a certain amount of rooms at the university, obviously. So I actually don't know if I have a roommate is my short answer.

MK: It sounds like a great leap of faith Brianna, as you head to the Sates. But my point being, it's the States, it's the U.S. You've been following the news like everyone else. You know, the numbers are going in the wrong direction when it comes to COVID. Is this a concern for you that it's not just what the university is doing, but it's the country where you are? And are you worried about the possibility there?

BRIANNA BURKE: Maybe a little bit. But then again, if I do follow procedures, not just in the university, but, you know, just in general, like try and not go out as much as possible, wear my mask if I have to go to the store or anything. Just stay away from people if at all possible, then I think I will be OK.

MK: It also strikes me, too, is just reading a little about your backstory. You lived through the Fort McMurray fires at the end of grade 8. Now at the end of high school, you've got the pandemic. That's two crises in one short life that you've had, which is sets you apart from a lot of people. How did living through those fires, how do you think that's helping you deal with the uncertainty of the pandemic?

BRIANNA BURKE: I think it helped me by going several days without receiving any solid information. A little bit of background information about me. I'm very responsible and organized person. I like to have things a certain way and just always know what's coming next. So I guess one thing that the fire prepared me for was not being able to know what's coming next. When we initially left town, our street was starting to burn. So we actually didn't know if our house was still standing until a couple days later when the city released a sort of street view so you could see if your house was still standing. Well, so I did have to go a few days without knowing anything. So I guess that prepared me for the pandemic by just adapting to all these moving pieces and just knowing that the situation is out of control and that there isn't much you can do about it except doing your part to keep yourself and others safe.

MK: You're 17-years-old and you've you've certainly learned a lot. I'm just curious to know as you're about to take this big step, not only going to university, but going to university in the U.S. in the middle of a pandemic, how do your parents feel about this?

BRIANNA BURKE: They do have their concerns just because I am their first child going off to university in the middle of a pandemic. So no doubt that they will have their worries, but I know that they do have a lot of trust in me and that if I do take proper measures to protect myself and others, I know that I will be surrounded by some really good people. So that part helps ease their worries a bit, too.

MK: I get a sneaking feeling, Brianna, that you're going to make your folks proud.

BRIANNA BURKE: I sure hope so.

MK: I'm sure you will. Brianna, great to talk to you. Thank you.

BRIANNA BURKE: Thank you so much.

MK: Brianna Burke is 17 from Fort McMurray and she'll be playing hockey and studying English education in McKendree University in Illinois.

SOUNDCLIP

[Sound of school bell]

MK: Scott Sharma doesn't shy away from a challenge. The 18-year-old lobbied for binary washrooms for students in his Ottawa high school. And by the time he graduated last month, the school had opened three. He's going to Bishop's University in Sherbrooke, Quebec, this September and he hopes to be playing rugby there as well. Scott, good morning.

SCOTT SHARMA: Good morning.

MK: Tell me about your decision making process when you were looking at the landscape. Was there any doubt about whether you wanted to go to school or stay at school or take a year off? What went through your mind?

SCOTT SHARMA: I think I've always wanted to go to university. And even before the pandemic, I was starting to look at universities and getting geared up to move out of the house. And pretty much what made me decide was the fact that my program that I'm going into is five years and that I want to get cracking and to be honest, for me to take a year off, I wasn't really sure of what I would do because normally when you take a year off, you go travel or you work. But COVID has really put a lot of restrictions around those things, so I thought to make the most of my year, I would go to school.

MK: So how's it going to work at Bishops between online classes or in-person classes? What do you know?

SCOTT SHARMA: So as of now, half of my classes will be in person and then the other half will be online. The classes that will be in-person will not be what they used to be. There will be masks are required in any indoor buildings in Quebec. There will be more spaces between students. And then there'll be lots of like hand cleaning and sanitization that will be happening between classes as well.

MK: As I mentioned, you started a non-profit organization which eventually turned into a school club called SAFE. You sound like a guy who who's active in your school community. Why was this important to you and do you think you're going to be able to have that kind of outlet now in a pandemic environment to at Bishops?

SCOTT SHARMA: What led me to start it and ultimately bring it to school, was I saw a need in my community that people were not who were trans and non-binding did not access to bathrooms or to locker room facilities. And it started to affect the mental health and it started affecting them logistically. Like it was taking them much longer to go to the washroom at school and it got in the way of their studies and for me, we had a few solutions that we could have had to make students lives much, much easier. And then in terms of what I hope to do at Bishops, there is a Rainbow Club at Bishops. And then but to be honest, I don't really know yet. And does the pandemic affect it? Absolutely. We're not having the same encounters that we used to have and life is just in general different now. So I think all that's a bit up in the air.

MK: But can different be better or are you worried that different is going to be lesser than?

SCOTT SHARMA: I think there's pros and cons to this pandemic. I mean, there's certainly some things that we will leave from this pandemic that this is a pretty good idea like I know around my school the amount of digital outreach they've been doing is something I hope they do in the future that they may have not done before. Information that's now being sent to us through email or through virtual town halls has been fantastic. There are definitely some good takeaways from the pandemic, from strategies we've used to connect with each other, but there is obviously downsides like you miss having that personal interaction with people or having life as we used to think was normal.

MK: Well we're all adjusting to the new normal. Scott, I hear that you're a rugby player. Are you gonna be playing rugby down at Bishops as well?

SCOTT SHARMA: Yes. So that's the plan.

MK: And how does rugby, I played rugby for years, how does rugby work in a pandemic?

SCOTT SHARMA: That's a great question. So currently, the Quebec University League has not made a decision whether or not we will be having unofficial season. Ultimately, it'll be up to them. But if we don't have a good competitive season, our coach has talked about having like almost an exhibition season against local schools because as of now, a lot of the cases in Quebec are on the island and Montreal and, you know, we're in Sherbrooke. So there are some local teams you could play against. And I mean, of course, a lot of our practises are having a lot more restrictions and limited number of people and a number of contacts are being reduced. So hopefully we'll be playing rugby. Our coach wants us ready to play rugby, but that's also still up in the air.

MK: Yeah, I guess like so many things and you sound positive, Scott, and I think that's great. I always admire the optimism of youth, but was it a bit of a downer the way that you're your high school career ended?

SCOTT SHARMA: Absolutely. Like for high school, rugby season is in the spring, so we missed out on our final my final senior year season. For me, it's just little traditions like prom ended the year assembly and near book signing and sort of saying a proper goodbye to the school that we've been at for four years and the people we've been going to school for four years. It's definitely a downside. I know, like our prom got postponed to next May and our school's still looking towards having some form of a graduation ceremony in the fall, but it's not quite the same.

MK: No. And nothing is. Nothing is, but you know, you're of the age where you can be very adaptable and from the sounds of it, Scott, you've got a bright future ahead of you. So good luck with your year ahead of you.

SCOTT SHARMA: Thank you so much.

MK: Scott Sharma will be moving from Ottawa to attend Bishop's University this fall in Sherbrooke, Quebec.

SOUNDCLIP

[Sound of school bell]

MK: Antonietta Gutierrez is 17 and graduated from the Etobicoke School of the Arts last month. She'll be starting classes in the social sciences at University of Waterloo this fall. Antonietta, good morning.

ANTONIETTA GUTIERREZ: Good morning, Mark.

MK: So tell me about your decision making process. Were you thinking do I go? If I go do I go to the to the university itself for do I stay at home? Or do it online? Like what were your choices and what did you decide?

ANTONIETTA GUTIERREZ: Yeah. So I think back in April, they hadn't even decided if they were going to do classes fully online or if they were going to do like a hybrid option. So it was kind of stuck in this limbo, like, okay, residence applications are closing soon and they're still like expecting us to put down deposits. And I was like super, super confused. And so at the last minute and May they announced, at least for my program, that they were going fully online. And so up until that point, I was like, OK, if I have to do a class on campus, then I have to move in to us. But since it's fully online, I made the decision to stay home just because it's made a lot more sense to be safer and have more time to kind of prepare.

MK: So you could have moved into residence then if you'd wanted to?

ANTONIETTA GUTIERREZ: Yeah, I could have, but I just thought it would be so scary being on my own and being in a dorm alone and not really being able to interact with people in the way that I expected to. So it was a difficult decision to make.

MK: I've got twin boys your age and they just graduated from high school and they were deciding, do we go or do we stay? And they've decided to take a year off because they thought doing the first year online just wouldn't be the same. But you've decided to go forward. You're making some sacrifices. Why do you think it was important to actually begin your university career online instead of on campus?

ANTONIETTA GUTIERREZ: For a couple of different reasons. One of them was probably financially, they're still charging the same amount to live on campus and I thought that that was ridiculous. And also that tuition is the same price and I had a lot of conversations with my family and it just seem smarter to save more money. We're in a situation that we can't control, so it's better to make a decision like this. So when I'm able to move, hopefully in January, it'll be a lot easier transition.

MK: Well, that makes sense and you were able to find a summer job this year. Tell me about the work you're doing that's really sort of propelling you into your university years.

ANTONIETTA GUTIERREZ: So this summer, I'm working as a community development worker for at the Dr. J. Children's Grief Centre, and they're an incredible non-profit organization that supports children, youth and families who have all experienced the death of a loved one. And so I've had a longtime connection with them and I was a client years back when I was 13, and then I became a volunteer. And I've always remained connected with them. And I think that the work they do in really providing that vital support to kids who don't often get that is super important. Like even in a pandemic, being able to put you know my mind where my passions are and to actually be able to give back to my community is super special.

MK: You're going to be doing this online. I mean, do you fear you're not going to be getting that same sort of rich experience that you would have been if you'd been sitting in a classroom full of students who have the passion that clearly you have?

ANTONIETTA GUTIERREZ: I do feel like in some ways I'm losing that, but in others, I'm also kind of used to online school. I've taken like e-learning courses on top of being in-person courses for most of high school. So I'm kind of adjusted to that environment. But of course, I think it all comes with challenges. So it be I think it's going to be interesting to see how that works out.

MK: What are you looking forward to the most about university?

ANTONIETTA GUTIERREZ: I think I'm looking forward to definitely my program and what I'm going to be learning. It's really interesting because I'm able to take courses all over the social science disciplines. And so I'll be able to get much more of a broader background on top of being able to actually work when I'm doing my degree. So I'm super excited for that because I think it'll be a little more of a different experience.

MK: You know the pandemic has really shaped the class of 2020, all of you. What do you think you've learnt from from your experience, from the past few months after turning your whole life upside down like this?

ANTONIETTA GUTIERREZ: I think in the beginning I was really sad. And part of me still is that I wasn't able to spend the last couple months with my friends and celebrate graduation and have prom and the way that I expected to. But I'm also super grateful to still be able to have connections with people, even though it may be virtual or it may be digital or some limited in-person stuff. I just think especially now I'm realizing how important it is to practice gratitude and just to remind yourself of all the things you still have and kind of keep are hopeful and optimistic look for the future.

MK: You've been through grief as you mentioned in your own life. How has that and I guess, plus the pandemic, how's that made you a stronger person?

ANTONIETTA GUTIERREZ: Yeah. I've had a lot of conversations with people about this. So when my dad was sick in the hospital, years back when I was about 10, I remember feeling a lot of uncertainty and fear of what was going to happen. And they're saying to people that that's, you know, how it feels for a lot of people during this pandemic. And I think for me, having spent years kind of being through this whole experience of grief and all of the difficult emotions and challenges it brings, I think coming into this pandemic, I was really able to adapt a lot better than most people just because I've had years of learning how to cope with that and and building kind of a stronger and more resilient outlook for life.

MK: Well I tell you, from where I'm sitting, Antoietta, your future looks very, very bright.

ANTONIETTA GUTIERREZ: Thank you so much.

MK: Great talking to you and good luck this year. I'm sure you're going to do great.

ANTONIETTA GUTIERREZ: Thank you, Mark.

MK: Antonietta Gutierrez is taking social science classes online at the University of Waterloo this fall.

[Music]

CBC Podcast: Unlocking Bryson’s Brain – Episode 1

MK: This summer, The Current has been bringing you some of the best from CBC Podcasts. Today we start a brand new series. When Bryson was born, he seemed like a perfectly healthy baby. But soon, the doctors confirmed his parent's worst fears. Something was wrong with Bryson's brain. After dozens of tests over nearly a decade, doctors are still searching for a diagnosis and Bryson's parents are still hoping for a cure. Here's episode one of the original CBC podcast, Unlocking Bryson's Brain: The Mystery Disease.

SOUNDCLIP

Keith: Laura's in labour. Contractions started around 4:30 am. Laura woke me up around 7am."

MCARTHUR VO

In this home video from 2006, I'm filming my wife in a hospital bed. She's wearing green cargo pants and a black tank top, pulled up high to expose her pregnant belly. It's one of the most important, most perfect, days of my life.

Keith: August 17th

Laura: We got here at 8:30.

Keith: Laura’s having some pretty intense contractions and she’s dancing through them.

Laura: They’re not that intense – not yet.

MCARTHUR VO

Laura has prepared a mix of music to help her through. Songs from Great Big Sea. ABBA's Dancing Queen. And Hallelujah, the Rufus Wainright version.

Dr. Beringer: "Push your little guts out like you did the last time, with the contractions"

[Laura grunting in labour]

Laura's mom Kathy: "Baby's coming soon."

Dr. Beringer: "C'mon, push, push, push push push."

MCARTHUR VO

After eight hours of labour, Laura pushes out our second son, Bryson.

Dr. Beringer: "Big head like Connor."

[Bryson crying]

Dr. Beringer: “Your little boy”

McArthur VO

Bryson is eight pounds, three ounces, and appears healthy.

Dr. Beringer: “Hello little man”

Laura: “It’s a boy”

Keith: “It’s a boy”

McArthur VO

When we get settled into our room at Toronto's Mount Sinai hospital, our two-and-a-half year old son Connor meets his baby brother for the first time.

Connor: "Hi baby Bryson. He's very tiny. Is he a boy? Is he called Bryson?"

Connor: "Happy birthday to you. Happy birthday to you. Happy birthday dear Bryson."

MCARTHUR VO

Connor sings happy birthday to Bryson and then gives him some presents [sot: Here you go Bryson!] books my sister helped him pick out that morning. And we give Connor a gift – from Bryson – a Mickey Mouse watch that we picked out a few months earlier at Disney World.

Connor: "Thanks Bryson."

MCARTHUR VO

Like I said, everything's perfect.

And I want to hold on to that day, and that feeling forever.

Because soon doctors confirm our worst fears -- every parent's worst fears.

Something is wrong with Bryson's brain.

MCARTHUR VO

You know that thing you say -- that you're supposed to say -- when you're expecting a baby and someone asks if you want a boy or girl?

I don't care as long as it's healthy?

I used to say that too.

But today -- thirteen years after Bryson’s birth -- when I hear someone express that sentiment it’s a painful reminder that my kid? He’s not healthy.

[Denlow Blvd 2]: Bryson Vocalizations

MCARTHUR VO

And on one hand, healthy isn’t everything. Bryson is great. He's loving and charming and lights up the room with his smile.

His condition is also the biggest challenge Laura and I have ever had to face. He can't walk, or talk, or dress himself, or feed himself, or use the washroom by himself.

Into his teens, Bryson functions at the level of a twelve month-old. He still needs 24/7 supervision and support. He has mood swings that turn into seizure-like episodes where he bites himself so violently, we're worried he'll tear an artery.

For most of Bryson's life, we've had no idea why he's going through all this. For years, Doctors have searched in vain for a diagnosis.

With no diagnosis, there are no treatments or cures, and we're scared to death about what will happen to Bryson when we're not around to look after him.

What we need is a medical miracle.

I'm Keith McArthur. Two years ago I decided to put everything else aside and dedicate my life to chasing that miracle.

This podcast is about my attempts to understand what's going on in Byson's brain and my journey to find a cure. And maybe, just maybe, by telling this story, someone listening out there will help us to find one.

This story is partly a father's memoir; partly a medical mystery.

In a typical mystery, the satisfying ending comes when a killer is caught, and brought to justice, and spends the rest of his life behind bars.

The happy ending in this story? Well, I guess we would unmask Bryson's mystery disease, find a cure, and unlock Bryson's brain.

And then what?

He learns to walk, and learns to talk, and grows up to be a man who can take care of himself, and live by himself, and maybe fall in love and raise a family.

But I'm getting ahead of myself, because I really don't know where this story will end.

But as a dad -- as Bryson's dad -- how can I do anything but believe?

ACT 2: NOT THE LIFE YOU EXPECTED

Keith: Hello

Laura: Hello

MCARTHUR VO:

I'm not alone in this search for a miracle.

[Laura 1 00:11] Laura: "I'm Laura Williams and my husband is Keith McArthur and my sons are Connor Williams McArthur and Bryson Williams-McArthur.

MCARTHUR VO:

That's Laura, the love of my life. We met 24 years ago, as undergrads.

At first, she told me she didn't want kids, but that changed after we got married three years later.

Somewhere along the line, we decided we wanted three kids. Or maybe four.

And in 2003, we learn that Laura is expecting our first.

Laura's first pregnancy was ... complicated. Bryson's big brother Connor was born three weeks early and the labor seemed to go on forever.

[Laura 2 0:42] Laura: "Connor’s birth was interesting. It was long. That's probably what I remember the most. It was 24 hours of labor -- hard labor. And him finally arriving in the world with a little bit of a struggle."

MCARTHUR VO:

Born with a struggle but healthy. Which means we can set aside our worst fears. For now.

As I watch Connor grow from infant to toddler, I feel a kind of love I've never felt before.

I'm smitten by this tiny person, who is so funny and loving and full of positive energy.

And so smart.

At home, we have a bunch of baby books that outline the developmental milestones that kids are supposed to hit. Sit up independently between four and seven months. Take their first step between 9 and 12 months. Say their first words between 10 and 12 months.

We become those obnoxious first-time parents who gloat to family and friends every time he hits a milestone ahead of the curve.

Somehow it feels like Connor's early accomplishments make us more accomplished... not just as parents, but as humans.

We're good at this parenting thing.

And we want to do it again.

Before Connor turns two, Laura is expecting again.

And because we already have a boy, I guess I kind of hope for a girl to complete the set.

But mostly, I just want another healthy baby.

And for me -- for the dad -- that's mostly just a wish.

But moms? For them, it's a big responsibility.

[Laura 1: 3:29] Laura: "Oh yeah -- no, I was very worried and very mindful of doing everything I could to help them have the best start in life -- protect them from anything that could be harmful or dangerous. And so I was very careful about what I would eat, I would drink what I would do. I'm just trying to prevent anything from happening to them that could come out of me having done something wrong during the pregnancy."

MCARTHUR VO

There are all these things pregnant women aren't supposed to do... and it's not just taking pre-natal vitamins and abstaining from booze.

It's everything from avoiding sushi and deli meats to staying out of hot tubs and avoiding hair dies or beauty products that might contain harmful chemicals.

So when she's pregnant with Bryson, I tell Laura I'll give up drinking along with her as a show of solidarity.

Then one day, when we're going for a cottage weekend on Georgian Bay, I pick up a pack of non-alcoholic beer.

You're not going to drink that are you? Laura asks me.

Yeah, I say, it's fine. You can drink it too. It's, like, point-five-per-cent alcohol.

Laura lets me know she's not going to put anything with any alcohol into her pregnant body. And if I'm really in solidarity with her then neither will I.

Honestly, I was kind of annoyed about it at the time, and yeah, maybe we even got into a little fight about it.

But when I look back on it now, it's a reminder of just how much pressure there is on pregnant women to be perfect. And a reminder of just how closely Laura adhered to that. She was going to do whatever she could to make sure our boys were born perfectly healthy.

And for the first 10 weeks of Bryson's life, we think we have another perfectly healthy baby.

So we capture all the milestones in home movies.

There's our trip home from the hospital

Keith: “Look – Baby Bryson is getting in his carseat for the first time.”

Connor: “Hi baby Bryson.”

Keith: “You ready?”

Laura: “I’m ready!”

MCARTHUR VO

And bringing Bryson into the house for the first time.

Laura: “Daddy, who you got?”

Keith: “It’s baby Bryson!”

Laura: “Is he gonna come home?”

MCARTHUR VO

A family trip to Marineland near Niagara Falls.

Keith: “Bryson is 6 weeks old tomorrow and we’re at Marineland on a very empty day.”

MCARTHUR VO

Bryson's first Halloween, which we spend with his cousins.

Keith: “Connor, what are you for Halloween?

{Laughter and Bryson crying}

MCARTHUR VO

Bryson won't stop screaming and Connor won't stop running around.

But it’s normal. It’s perfect.

Around the same time, we take Bryson in for baby pictures at Sears.

This one's not on video, but I remember it clearly.

The photographer tries to take that classic shot where the baby's head is propped up on his tiny fists. Only it won't work for Bryson. His head keeps falling to the side.

And over the next couple of weeks, it becomes increasingly clear with Bryson that something – is – different.

All babies have floppy heads, but his is ... floppier. His limbs are floppy too. And his eyes aren’t tracking objects the way the baby books say he should be able to.

He's nursing okay and putting on weight, but something feels wrong.

[Laura 2 4:53] Keith: "What's your first memory of thinking that something was different with Bryson?"

[Laura 2 4:53] Laura: "It's hard for me to think of an actual memory but I definitely have these memories in my mind of pre -- the kind of pre memories of before I thought something could be wrong and post memories -- everything that's followed since especially during that very acute phase of realizing something was wrong."

MCARTHUR VO:

We bring Bryson in for his three-month checkup and the doctors agree.

Something is wrong, but they don't know what.

They diagnose Bryson with hypotonia, the medical term for kids with loose, floppy muscles.

[Laura 1 5:02] Laura: "I can remember one specific doctor's appointment maybe that's the day I knew -- them confirming Yeah he's not tracking not holding his head he should be doing those things. Before that I had but I still think of today as a bit of a honeymoon phase where I was so in love with the world that I had these two boys and I felt like I could actually manage it that I could handle having two boys, that the second time around having a child I was more in control I knew what I was doing. And so hearing from the doctor that something was wrong ~~literally~~ pulled a rug out from under my feet that I absolutely had no idea what I was doing and I was more scared than I ever thought I could ever be in my life."

MCARTHUR VO

Those baby book milestones that provided so much joy when Connor overachieved?

By the time Bryson turns one, he's missed all of them.

Keith and Laura: “{Singing Happy Birthday}

Keith: “Hi buddy!”

Laura: “Happy first birthday.”

Keith: “You’re one year old today.”

Laura: “One year old, can you believe it?”

Keith “We’re so proud of you!”

MCARTHUR VO

When it becomes clear that Bryson has more than just floppy muscles, doctors change his diagnosis to global developmental delay. That means it's not just his body that's falling behind. It's also his brain.

For months, I hold on to the belief that Bryson is just missing milestones... that he will walk and talk and we'll get our perfect family back again.

In some ways, it's easier for me to ignore what's right in front of me. I'm busy at work; a reporter with an exciting career at a national Canadian newspaper.

But Laura's at home with the boys. She knows long before me that Bryson won't just grow out of this.

[Laura 1 09:17] Laura: "So at that time you were at work. I was the one who was at home you know trying to help support Connor and getting to his school his appointments his special activities and now had Bryson's -- All of these new appointments that I didn't imagine having to have and taking him to many of these -- you accompany me to some but there was a limit to what you could do and still keep your job and manage. So I think every one of those appointments slowly started to kind of erode my confidence in thinking that -- in being optimistic."

MCARTHUR VO

So her period of mourning begins way before mine.

Because that's what this is -- a kind of mourning.

[Laura 2: 20:12] Laura: "For sure there's an acceptance phase it's probably similar to those stages of grief that people go through when someone dies. I mean you have to let go. It is a death in a way. I know that sounds probably overly dramatic but you picture your life and what it's going to be and you want the best for your kids and you know you can't protect them and I know that now I can do what I can do but the universe has other plans. But but you have to reimagine what your life is going to look like. So you have to go through those stages of grief. You have to let go of what you thought you had. And and now really truly accept and see what you have in front of you. You also don't know how to do it. There's no guidebook there's no -- there's often no help, and the help that you do get is really sincere and authentic but it is still limited."

Act 3: NOT RELATED

MCARTHUR VO:

The years pass... and doctors still don't know what's wrong with Bryson. So they test.

And test.

Dozens of tests, each one to rule out a horrible illness. We wait for the results, sometimes for months, and while we do, we Google the things he's being tested for. Angelman syndrome. Fragile X. Smith-Lemli-Opitz syndrome. Pompe syndrome. Rett Syndrome. Prader-Willi Syndrome. ATR-X Syndrome.

Some of these are degenerative; some would kill him.

One of the scariest possibilities the doctors want to test Bryson for is SMA -- Spinal Muscular Atrophy -- a rare genetic disease that can kill babies before they reach their first birthday.

Of all the diseases Bryson is tested for, that's the one that stands out.

[Laura 2 5:38] Laura: "~~So there Bryson was tested for something called spinal muscular atrophy, which is a pretty devastating diagnosis to get. He definitely had some of the symptoms early on. And~~ I was worried about this particular test and really anxious to get the results back. And I was told once we did the blood draw that it would take I think it was three months to get the results back."

MCARTHUR VO

Yeah. Three months. They send many of these tests to US labs and there seems to be no rush on the results.

Laura has this big paper calendar where she keeps track of all of Bryson's appointments and when we're supposed to get test results.

[Laura 2] Laura: "And so I would put those things on my calendar and I'd tuck them away in my brain and and really try not to think about it. But as the date came closer to that three month mark, I was getting more and more anxious. And I thought you know what, sometimes they just don't call or you know maybe if I call they'll have it in and they just haven't gotten around to calling me yet. So I remember calling and talking to our nurse and she said well if you haven't gotten a call then the results aren't in yet. I thought OK and I hung up the phone and was very anxious and because of that reaction it really felt like Don't call us we'll call you. And I don't usually accept that but you start to get a little broken after a while of all of these follow ups and and kind of being told you're not in charge, somebody else is in charge."

[Laura 2] Laura: "And so I waited another month and I called again and I talked to the same nurse and she said yeah like I said, don't call -- like we'll call you when the test comes back. If you haven't had a call yet it's obviously not back. And I push this time because now I'm really scared wondering why is this taking so long. I was told three months it's four months I get it there's delays. And I pushed her and she said OK hang on let me -- I'll go look in the file and a few minutes later she came back on the phone and she said Yeah I don't see that test having been ordered. There must have been some mistake. That test hasn't been order for Bryson. Did you want it done? And I said -- I kept it together for a couple minutes and I said Yes I do want to get that done and that was ordered if you could follow up and she said she would. And I can remember hanging up the phone and then just sliding down the wall. Tears streaming from my eyes. Devastated at the grief and anxiety that had already been through for four months waiting for this answer to have been dismissed. And now I was going to have to wait another three to four months to find out. And it felt again like too much to bear. And I was alone at that moment and felt very alone in my grief."

MCARTHUR VO:

So we were told to wait for another three months to find out if Bryson had this rare condition in which life expectancy is measured -- literally -- in months.

Half a year after Bryson's neurologist first recommended that he get tested for SMA -- we finally learn he doesn't have this deadly disease.

Which is great, except that we're no closer to a diagnosis.

But two of the tests do provide us with some early clues about Bryson's condition.

Sometimes when a baby has hypotonia -- or floppy baby syndrome -- it's because there's an abnormality in the muscles -- muscular dystrophy for example.

So Bryson's doctors want to do a biopsy. They tell us it's a standard procedure, but I mean, they're slicing a chunk of muscle out of his thigh.

We're terrified when we say goodbye to Bryson in the pre-op room. No matter how standard this procedure is, I can't help but worry that something might go wrong, that this might be the last time I see my little guy. So, it's a huge relief when doctors come back and tell us that the surgery is complete, and everything has gone well.

When the results come back a few weeks later, we learn Bryson's muscle tissue mostly looks normal. So the reason his muscles aren't working? It's not because there's something wrong in the muscles. It must be because something’s not right in Bryson's brain.

So doctors order up an MRI, which -- in Bryson's case -- also involves sedation. One of the things they're looking for is to see if his brain has the right structure. If a brain is too smooth -- if it doesn't have enough folds and ridges -- then there's not enough surface area to maximize the brain's cognitive power.

Researchers have learned a ton in the past couple of decades about the brain's ability to rewire itself -- after a stroke for example. But a smooth brain?

That puts serious limits on a brain's capacity to re-wire itself -- to work around a disease.

But the MRI results show that Bryson's brain is shaped just like anybody else's.

So what do we know so far? We know Bryson has a condition that affects his brain and muscles. But we also know that as far as doctors can tell, Bryson's brain and muscles look normal. We've been able to rule out some pretty scary diseases, but beyond that, Bryson's condition remains a complete and total mystery.

We set aside our dreams of having that big family of three or four kids. If Bryson’s condition is genetic, there’s a good chance he inherited it from one of us. And we worry about passing it on to another baby, that maybe we couldn’t handle looking after so many complex needs, that it wouldn’t be fair to Connor and Bryson.

We look into an international adoption, but that’s not straightforward either, because I also have health challenges - chronic kidney disease. I don’t think of it as a big deal. I have to go in for regular tests and appointments just in case things take a turn for the worse. And maybe some day, I’ll need a transplant or dialysis. But because it’s a chronic illness, adoption becomes more complicated. As much as I love my two boys, I long for a daughter, but that’s a dream I set aside.

MCARTHUR VO*

[Sick Kids Waiting room]

It feels like Bryson's entire life is one doctor's appointment after another.

I spend hours each month in doctor's offices. But it’s nothing compared with how much time Laura and Bryson spend there.

When you're waiting to see a specialist -- say the ophthalmology clinic at the Hospital for Sick Children -- it's not uncommon to wait three hours for a 10-minute visit with the doctor.

I wouldn't give up the Canadian system of free-health-care-for all for anything, but rare disease parents I know in the United States tell me long waits are far less common in that country.

~~Here's an example.~~ One day, Laura and I are driving Bryson to a neurology appointment. Traffic is bad so we're running late and it's stressing me the hell out. I'm worried we'll miss our appointment and have to wait weeks or months for it to be rescheduled.

We arrive at the hospital just as the appointment is about to start. But as we’re about to pull into the parking lot, we see the specialist we’re scheduled to meet right then leaving the hospital in his workout gear.

[Laura 2: 00:41] Laura: "I was so angry. It's one thing to see him leaving the building. He didn't see us but he was leaving the building in his running shorts jogging away at the time for our appointment. And then we didn't see him for another three and a half hours. No. And the thing is you're bringing a child there who has severe cognitive and physical disabilities. It's one thing -- It's not respectful to keep us waiting. But it's really not respectful to keep him waiting. A child who has to deal with so much when they're in that environment and in fact it got to the point where every time we would drive into the parking lot of the hospital, he would start to cry because the experience was traumatic and scary and long and tiring for everybody."

~~[Laura 2: 00:41] Keith: "Would there be doctors who are listening who are like well don't I deserve a lunch break like aren't I allowed to go out and have a run?"~~

[Laura 2: 00:41] Laura: "Absolutely. But there has to be a different way. Because it's one thing even to be half an hour late, but three and a half four hours later truly makes no sense to me. Everybody should have balance in their lives. For sure but we all have to make choices and we are all there. We are there leaving our jobs. Bryson is there missing school. ~~A child like that you have to be --~~ you have to bring enough for them to eat to drink to be changed. You also have no way of entertaining them in a way that other children can be entertained. So we would sit at one of the clinics where they would have a great video gaming system and coloring and the other kids there didn't seem to mind at all. But Bryson didn't have access to that world because he couldn't write or play video games or move and I was always so stressed that I would miss the appointment because if I went to go change him or go get a coffee or just take him for a little walk to get his mind off of where we were, to just not know. So I think that we really do need to be aware of the differences and how that contributes differently to a person's experience."

MCARTHUR VO:

And it's not just the waiting that's exhausting. It's also the fact that we keep having to fill in nearly identical forms at each clinic -- even within the same hospital.

Then, when the appointment starts, we get asked the same questions we've already answered in the forms.

I don't think I'm exaggerating to say we probably answer the exact same set of questions over 100 times. Sometimes we answer the same questions four times in a single appointment, first in the forms, then by a nurse, then by a resident or fellow, and finally by the specialist. Then we come back to a followup appointment three months later and answer the same set of questions all over again.

The hardest questions for Laura are the ones about Bryson's delivery.

[Laura 1: 13:31] Laura: "You do get questions like ~~um did you --~~ Were you sick when you were pregnant? How is the labor and delivery? And Bryson's delivery was much shorter than Connor's but it was still very challenging and he arrived face up and so you know they did need to use forceps and he had a large hematoma on his head and and I worried that it was because of that and that I was too stubborn not having a C-section and that because I was very confident and sure that I needed to deliver naturally and not with C-section and I regretted that decision for a really long time because in the back of my mind I truly thought that that caused his disorder and I felt very guilty about it. I also wondered if there was anything that I had done when I was pregnant so a large burden. And I think also not knowing. So it's nobody's fault if if a mom gets sick or if labor and delivery is traumatic or baby's born early that's not the mom's fault. But when you don't know you have no way to grieve it to put it into some kind of context and perspective and move on. I just had this abyss of wondering and I couldn't move on from it. It felt almost impossible actually to put that behind me."

[Laura 2 15:13] Keith: “You mentioned like the questions about what the delivery was like and whether you were sick. The one question too that always came up is we kept getting asked if we could possibly be related.”

[Laura 1: 15:23] Laura: "Yeah that was fun. I remember the first time they asked us, we both just laughed and then they looked at us seriously. We really mean it. Yeah. We really mean it. You have to answer this question and. Then all of a sudden I remember actually we had this pause and moment of worry like Oh my God is there any chance we could be related [laughs] but no, we're not related and we endure that question now and we laugh with our friends of other special needs kids because they too have had that question asked several times of them."

MCARTHUR VO:

They ask this question, I later learn, because genetic diseases are much more common when the parents are related.

But despite all the tests and all the questions, we're still no closer to a diagnosis.

The best doctors can do is tell us that Bryson likely has some kind of rare genetic condition.

But they don't know what it is.

And it's possible, one doctor cautions us, that we may never know.

ACT 4: CONNOR AND BRYSON

[Connor 1: 1:01] Keith: "Sorry, I'm just trying to fix the cord."

[Connor 1: 1:01] Connor: "No it's fine. I hope you don't use this as the intro."

[Connor 1 00:00:02] Keith: "OK can you start by telling me who's in your family -- who you are and who's your family."

[Connor 1 00:00:02] Connor: "Hi I'm Connor and in my family is my dad Keith who's making this podcast. My mother Laura and my brother Bryson and also my dog Quincy."

[Quincy barking]

MCARTHUR VO

Today, Connor is 16. And Bryson? He's a teenager. He turned 13 last August.

I sometimes think of Connor as having the worst of both worlds. He doesn’t have a sibling he can play with. At the same time, he doesn’t get the undivided parental attention that only children are supposed to get. Because Bryson? He needs a lot of attention.

[Connor 00:03:07] - Keith: “Do you think that your life would be very different if you had a typical brother?”

Connor: “No. I feel like you and mom do a really good job of making sure that my needs are also accounted for as well as his and keeping everything in consideration. It's just kind of something that I live with, it's not really what defines my life.”

As much as we try to do things together as a family -- all four of us -- we also take time with Connor where Bryson's needs aren't going to get in the way. Some of my best memories are trips that Connor and I do alone -- to see the Blue Jays in Florida for Spring Training or our trip to Disneyland in California. Laura takes Connor on overnight ski trips. And both of us take him on a trip to New York City for his fourteenth birthday, while Bryson stays with his grandparents and his caregiver.

But still, there’s always this feeling that when you’re spending time with one kid, you’re letting the other one down. I don't know. Maybe all parents feel that way.

[Connor 1: 1:26] Keith: "When do you remember learning that something was different with Bryson?"

[Connor 1: 1:26] Connor: "I don't remember learning. I feel like I've just kind of always known and it's always just kind of been a fact of my life. Like because he was so young and I was -- we're so close in age that my brain never really processed that at -- like when I realized at the start. I just kind of always grew up with it and it was just sort of a fact of life. That my brother couldn't talk with me ...

MCARTHUR VO:

The story I want to tell you is that Connor loves Bryson deeply and would do anything for his little brother.

And that's 100% true. But it's also more complicated than that.

And it's not the story Connor wants to tell.

[Connor 3:42] Keith: "How would you describe your relationship with Bryson?"

[Connor 3:42] Connor: "It's weird. It's not something that I would -- It's not honestly something that I think about a lot. I'm just kind of like his brother and he's just -- I'm just thinking of how to describe it because you know we project things onto him that we think that he's thinking and saying and like from his facial expressions who he likes who he doesn't like his like relationships at school but like none of us really know what's actually happening inside his brain or what he's thinking or if he's thinking -- I kind of just see him as like -- it might sound weird or distant but he's kind of just there and he's kind of just always been there."

[Connor 3:42] Keith: "But we know like we can see that when you're playing with him he seems to smile more than he does when anybody else is around like that's not just us projecting on him, is it?"

[Connor 3:42] Connor: "I don't know. I don't know if I'd be a completely impartial source to answer that question. We all want him to think that way or we all want to think that he thinks that. I I see it too. But again I don't know if that's just us all kind of agreeing that that's true because it's less painful. I mean maybe he does but maybe that's just kind of the way his brain works?

[Connor 3:42] Keith: "When you were younger when, when me and mom weren't really sure how much he understood, you were the one who always really thought that he understood everything that we were saying. Now you're not sure.

[Connor 3:42] Connor: "I was very naive as a kid. I like to believe a lot of things that looking back I know weren't true, because well it makes your life more interesting, right? Like you know how you imagine as a kid that you're in this giant magical fantasy world and that everything's going to work out perfectly. But you know as you get older you start to use your reasoning and realize that maybe not everything's going to be as perfect as you think it was."

[Bryson sounds]

MCARTHUR VO

Bryson is more than his mystery disease, more than his tests and his appointments.

As he grows up, we come to know Bryson as an expressive, loving little guy who understands much more of what is going on than he's able to communicate. He seems to understand conversations around him, and the questions we ask of him, even if he can't answer in words.

He lets us know his preferences by reaching forward with both hands and choosing -- say between pudding or applesauce -- or putting his hands in front of his mouth if he doesn't want to eat at all.

Then one day when Bryson is five years old, we're giving him a bath -- something Bryson hates -- and we hear him say what clearly sound like the words "All Done."

It's shocking at first. And we assume we must be hearing what we want to hear.

But over the next few weeks, whenever we're trying to get Bryson to do something he doesn't want to do, he makes the same sounds, sometimes in rapid fire succession.

[] Bryson: "Ah Done. Ah Done."*

MCARTHUR VO:

As the years go by, he picks up four or five more verbalizations that are approximations of words: “Mmm” for Mom; “Dahd” for Dad; “Non” for Connor. When he’s going through a seizure-like episode he’ll sometimes say “Head, Head.” Laura and I think he’s telling us his head feels strange; but Bryson’s caregiver Edna thinks he’s calling for her. But none of these are as reliable as his “AhDone” sound. As much as I try, I can’t get him to say these other words on demand when I have the tape recorder running.

MCARTHUR VO:

Bryson is also a strikingly handsome little guy. He's far too thin -- it's a constant battle to get him to consume enough calories -- but his face is gorgeous, perfect features nestled under fine golden hair. His grandmother says he has the face of an angel, and okay, she's biased, but strangers also come up to us in the mall and tell us how beautiful he is.

Bryson spends his days at a public school in north Toronto that caters to kids with physical and cognitive disabilities. He loves it there. And seems to get annoyed on weekends when he has to spend time with us instead of getting on the school bus to go see his friends.

Oh! And one more thing you should know about Bryson.

He loves the Toronto Blue Jays. At least, we think he does. I'm a big Blue Jays fan, so maybe I'm projecting. But when he's little, Bryson doesn't seem to be interested in television, except when I'm watching baseball, and then he turns his gaze to the television and watches intently. We wonder if it's the bright green color of the grass -- or astroturf -- that Bryson is drawn to.

[Sound FX: Blue Jays play by play]

MCARTHUR VO:

But when I start taking him to games in the wheelchair seats behind home plate, Bryson seems to love that too. Usually he hates crowds and loud noises, but there's something calming for Bryson about being at a Jays game.

So even though Bryson doesn't really talk, I feel like I know him pretty well.

But there's still so much I don't know.

For example, what does he think about me doing this podcast, making his private life so public?

I know some of you will say I shouldn't be doing this, that Bryson has a right to privacy, that this is his story to tell.

And I get all that.

I've asked Bryson if it's okay to do this podcast, but I don't know if he understands. He just looks back at me with his big blue eyes.

But if telling Bryson's story could help to find a cure -- one that could give him independence he doesn't have now -- one that could some day allow him to tell his own story -- wouldn't he want that? Wouldn't it be worth it?

And maybe telling Bryson’s story can help others too. Because here’s the thing. Rare diseases aren't actually that rare.

There are thousands of them -- most estimates say there are somewhere between six thousand and eight thousand rare diseases.

They're defined as a disease that affects fewer than 1 in 2,000 people. Which means that in theory, a rare disease could affect nearly four million people around the world -- roughly the population of Alberta or Oregon.

Health Canada estimates that 1 in 12 Canadians has a rare disease, roughly the same fraction of people who are left-handed. So yeah, the chances are pretty good that you know people with rare diseases. If you don't have a friend or family member with a rare disease, you're probably in the minority.

My mom has four grandkids and three of them have rare diseases. In addition to Bryson, my two nieces both have a rare genetic disorder known as periodic fever syndrome.

So I take strange comfort in knowing that as isolated as we feel sometimes, having a kid with these severe and debilitating conditions and no diagnosis, we're not alone. There are hundreds of thousands of other parents just like Laura and me, waking up each day and hoping for a diagnosis, praying for a cure.

And that's not even counting the millions more praying for cures for diseases that aren't so rare.

Who hasn't been touched by a family member suffering from cancer or dementia or diabetes or heart disease? Who hasn't prayed for a medical miracle for someone in their lives?

[Keith to Bryson 1:02]

[Bryson Sounds]

Keith: “Hey Bry. Can I talk to you about something? ~~You know how I’m holding this mic?~~ You know how I’m doin this podcast Brycie and I’m talking about you? I want to tell you something about that okay? Sometimes I talk about how we’re trying to find a cure for you. And I want you to know that it’s not because I think there’s anything wrong with you. I think you’re perfect and I wouldn’t want any other kid. I don’t want to change who you are.

But me and mom are working with scientists to try to see if we can find medicine that will make things easier for you. We want to try to make your life easier. We want you to be able to tell us what you need and when you’re hurting and we want you to be able to move yourself around, either by walking or by moving your own wheelchair and we want you to be able to make your own choices about your life. Does that sound good? Is that okay? I love you. I love you.”

ACT FIVE: A MEDICAL MIRACLE

MCARTHUR VO

Before Bryson was born, I wrote about marketing for the Globe and Mail newspaper. I spent a lot of time chatting with the bigwigs in the ad business – the Don Drapers of the 21^st century. Arthur Fleishmann was one of those guys. He ran John Street, a hot boutique agency in Toronto.

People would talk about John Street because of its ads. And they'd talk about Arthur because of his daughter. From what I heard, Arthur's daughter Carly had the most challenging kind of autism. She couldn't speak or write at all, kept her parents awake all night, and had these violent episodes.

Laura was pregnant with Bryson when I first heard about Carly, and these stories frightened me. I felt lucky to have one healthy child at home and didn't think I'd have the strength to deal with a sick kid. I prayed for another healthy baby.

Then Bryson was born. I left the Globe and Mail and lost touch with Arthur.

But a few years later, I heard about Carly again.

After a decade of silence, Carly sat down at a computer one day and started typing, not just random letters, but words... a sentence almost. "Help,” she wrote. :teeth, hurt," she wrote. The rest of her family was away on vacation when it happened and the breakthrough was so far-fetched they were sure Carly's caregivers had it wrong.

But over the next few months, the typing continued, and it became clear that Carly was a bright, funny kid, who'd simply been unable to communicate until now.

Carly's awakening generated news coverage around the world. She wrote a speech for her bat mitzva and Ellen DeGeneres read it on video, literally becoming Carly's voice. [Ellen SoT] Carly appeared on the late show with Steven Colbert [Colbert SoT] and started her own online talk show, interviewing her favorite celebrities.

https://www.youtube.com/watch?v=a34qMg0aF6w

[00:12] Carly: "I would like to introduce you to my first guest ever. He has been a stripper, a police officer, a secret agent, a reporter, a boyfriend to many, and soon he will leave his wife to be with me. How about that Channing? Would you date a 21-year-old person with Autism?"

Channing: "Yes, if I got permission from my wife."

Carly: "All right I've got my lawyers working on your divorce papers as we speak."

MCARTHUR VO:

Carly's story gave me hope for Bryson.

Could it be possible for us to unlock Bryson's brain?

I became obsessed with these stories of medical miracles.

There was Martin Pistorius, who developed an inexplicable illness and was unable to move or communicate for years. Doctors told his family he had the mind of a baby. Then at age 26, he had his own medical breakthrough and started communicating through a computer. It turned out he had been completely aware of everything going on around him for more than a decade, but was unable to let anyone know.

And then there's the story of Lorenzo Odone, a healthy kid who suddenly developed adreno-luko-dystrophy or A-L-D. In 1992, they made a Hollywood film about his story called Lorenzo's Oil.

His parents – played by Nick Nolte and Susan Sarandon – were told there was no cure and he had just two years to live. But they refused to accept the diagnosis and took on the medical establishment, represented in this scene by a doctor played by Peter Ustinov.

*https://www.youtube.com/watch?v=CxkylRxJxh8

[00:21] Peter Ustinov: "Of course I anguish for the suffering of your boy and of course I applaud you for the efforts you make on his behalf. But I will have nothing to do with this oil

[00:38} Susan Sarandon: "We are not asking, doctor, for your anguish or your applause. We are simply asking for your courage."

MCARTHUR VO:

There are scenes in Lorenzo's Oil, where he's thrashing around the room in pain, and it reminds me of Bryson in one of his violent seizure-like episodes.

In the Hollywood version of Lorenzo's story, there's a happy ending. His parents discover they can make Lorenzo better by feeding him a mixture of food oils.

But the real life story goes on after the movie ends, and it's not quite so happy. Lorenzo died in 2008. He was 30. And the oil didn't work for most kids with ALD the way it did for him.

But even though I know that, I want to believe. I want to believe in the miracle of Lorenzo Odone, and Carly Fleishmann, and Martin Pistorius, because then I can believe in a miracle for Bryson.

But after nearly a decade of testing, it feels like we've hit a brick wall in our search for a diagnosis.

Even a new opportunity that initially seems to offer so much promise -- a single test to check Bryson's blood for dozens of rare genetic diseases -- has come up empty.

After so many ups and downs, you can forgive me for giving up hope. I don't remember when exactly, but at some point I come to accept that we'll probably never get a diagnosis -- that we'll probably never be able to find a cure -- that Bryson's treatments will be limited to physiotherapy and speech therapy.

And -- that we won't know if this is a disease that will allow Bryson to live a long life, or one that is degenerative -- one -- and I hate to even speak these words -- one that could kill him before he becomes an adult.

Then a couple of weeks before Christmas in 2015, Laura gets an email that will change our lives forever.

[Laura2: 19:56] Laura: "She said we received the results and would like to see you and Keith because something has come. Or we have a diagnosis -- We think we have a diagnosis. And I remember my heart in my throat like just thinking -- this can't be real I was at work when I read it and I just thought how are you kidding me? Really? How can this be? And then I remember thinking -- OK I can wait for the appointment. She made it very quickly. I think it was in like a few days maybe it was Monday and that was Friday or something like that. And but I emailed her back and I just said, "Can you just tell me or can we have a chat on the phone I just need to know if it's degenerative" and I can wait for the actual diagnosis you don't have to tell me what it is but please just tell me if it's degenerative because I need to know that right now."

MK: That’s episode one of Unlocking Bryson’s Brain from the team at CBC Podcasts. Tune in tomorrow as we continue this story.
4

Closing

MK: That’s our program for today. Stay tuned to Radio One for Q with Tom Power. And don’t forget the CBC Listen is the new, free app that lets you discover the very best in Canadian audio, from CBC Radio, CBC Podcasts, and CBC Music. Listen to The Current live from anywhere on your phone or tablet, and catch up on show highlights on demand anytime. I’m Mark Kelley. Thanks for listening to The Current.

The Current Transcript for August 3, 2020

STORIES FROM THIS EPISODE

Prologue

High school grads face uncertain future as they prepare for university amid pandemic

CBC Podcast: Unlocking Bryson’s Brain – Episode 1

Closing

Aug. 3, 2020 episode transcript

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