The Weight of a Name: Robert & Kelli Canfield on Pompe Disease, Lost Dreams, and Finding Mercy

Welcome to followed by mercy with Austin Gardner.

This is where we talk about God's grace and mercy

that meets us and follows us even in our lowest moments

and lifts us to hope again.

No matter what's been broken, here's love still heals.

So let's move from pain to praise together

because surely goodness and mercy does follow me and pursue me

all the days of my life.

I am very excited today to have with me Robert and Kelly Canfield,

extremely good friends of ours.

And I really believe that they have a message

that can change our lives, all of us, help us all

because when you go through suffering,

you learn something about the Savior.

And when you go through stuff, it changes you.

So Robert and Kelly, thank y'all for being here today.

And so very happy to have you.

I hope that you will just relax and we can just chew the fat

and talk about it.

So let's start off, Kelly.

Maybe people don't understand.

You have a disease and tell us a little bit about that.

I have what's called Pompeii disease.

It's a type of muscular dystrophy.

It affects your muscles.

I guess the easiest way to explain it is that your body produces glycogen,

which acts like the gasoline or the fuel for your body.

And then when it is done with the glycogen,

it puts it into your cells into what's called a lysosome.

And that's like the trash bag of the cell.

And that's where the cell gets rid of everything that it doesn't need.

And then when the glycogen gets into the lysosome,

your body makes an enzyme called alpha glucositis,

which goes in and breaks down that glycogen.

For me, I don't make enough of that particular enzyme.

So the glycogen gets stuck in the cells

and eventually ruptures the cells and kills the muscle.

Well, I'll just be honest with you.

That's above and beyond anything I could ever understand.

But tell us when they tell you you have Pompeii, what do they say?

Well, it causes weakness in the muscles closest to your torso.

It actually starts in the diaphragm muscles

and radiates outward as it progresses.

And so because I don't make enough of that enzyme

to clear out all of that stuff that gets stuck in my cells,

the muscles end up dying.

And so it starts kind of in the middle of your body radiates outward

and causes weakness, weakness in your respiratory muscles,

your breathing muscles, weakness in your thighs and upper arms.

When I started noticing symptoms,

I had difficulty rising out of chairs and climbing stairs,

working with a different walking differently than people,

other normal people, difficulty brushing my hair and my teeth,

things like that.

So Robert, how long have you been married?

Go get in trouble here.

I was trying to make sure I did right.

18, almost 19 years.

And so when did you first start thinking?

Something's not quite right.

We were in Peru.

We were living in, I'd keep a Peru for six months.

And Kelly's always had a hard time climbing stairs.

And I just thought-

You would be the first man?

Yeah.

When we were in Peru and other, I mean,

I was just like, we got to, we got to go out there and we got to work out more.

We got to do it, you know?

And she would always like, can you help me out type thing?

And I would have to give her my arm kind of frustrated type thing.

Like, you just got to push through this.

We got to, come on, you can do this type thing.

We walked a lot in Peru.

And so she would always fall behind.

But I never really thought that it was anything not normal.

And then after we had Charlotte,

which is our first natural born kid, child or daughter,

she started getting, I guess it was progressing, started getting worse.

And I didn't really think anything of it until, was that your house?

And your wife's like, Kelly can't even climb the stairs.

She's, I mean, she says, I mean, I think Ms. Betty said that's not normal what's going on.

Well, I think Betty looked at y'all live right across the street.

And Betty looked across the street.

Kelly was lifting the baby seat and setting it one step, climbing a step,

setting a step, Betty told me something's wrong.

And so Robert, I guess I want people to understand there's hope and there's help.

And so tell us what you felt the very first day.

When you found out this, when it was finally confirmed, what did you feel?

Well, I mean, don't forget, I was pretty close by.

Yeah, you were.

I mean, you're the one that told us to go see the doctors.

And so I guess, I mean, what I first felt when we first, when it confirmed his pumpay,

I mean, I didn't really feel anything.

Before all that, we talked at least a year and a half, two years,

was it that we went to specialists or something like that?

Did I miss quite a few years?

Yeah, you told us we had to go to the doctors to get this figured out.

I mean, I would just, I'm from rural Ohio,

a little small town, and so I don't like going to the doctors,

never cared for hospitals.

Don't know about the specialists.

Yeah, I mean, we know people now in hospitals.

So you told me, I mean, I didn't know what to do.

And so you told us to go see specialists.

And so Kelly started seeing specialists.

And Kelly, in one of our conversations, I said,

we prayed three times just like Paul did for the Thorne to be removed.

So let's just take the grace that he gave us and just enjoy it.

And she says, I understand that thought process.

She said that there's also other Bible of a lady that spent all she had.

And she's like, I air on that side.

I was like, I want to figure out this issue.

I don't worry.

And I mean, I guess I don't know.

I didn't, I probably air on that in the early part of my marriage

because I didn't really think about it as much as I probably should have.

I'm sure it was pretty hard to think she had a life threatening, chronic disease, right, Kelly?

I mean, none of us think like that.

I mean, it's like, okay, she's got the flu, she's a little weak, she's exercise.

Yeah.

That's what, and that's what I thought.

And I wasn't skilled at it.

Let's get her a vitamin.

Yeah, get her a vitamin.

I didn't, I didn't know about ALS.

I didn't know about Lou Gehr's disease, didn't know about all these things.

So are you missing those diseases?

Because when Kelly first started noticing weakness, right, you correct me if I'm wrong.

You started talking to people in the medical field and one person, Kelly, she's a studier.

So she's educated and I'm not so much educated.

And so she started studying things out.

And some of the symptoms seemed like it could have been ALS.

Kelly, are they related?

They're not related and not really.

But in symptoms like the footprint of the disease is similar, but they're not similar diseases.

So when we were headed to the man, the neuromuscular, the neuromuscular specialist,

who told me that I had muscular dystrophy, wasn't the Pompeii diagnosis.

This was before the Pompeii diagnosis.

When we were headed to meet him and to go over everything,

I, on the way, I told Robert that it is either, it's either some type of muscular dystrophy or ALS.

So that's why he brings ALS up.

So I want to know what you were feeling.

And because we're going to try to help people.

Sure.

We're not here for a pity party for you.

Of course.

And I know I thought what you won't.

But I have cancer and I enjoy somebody who's going through it looking at me and saying,

look, I got the same stuff and this is how God's helping me.

So that's where we're headed.

That's the goal that we have in mind here.

And so I want people to understand how terrifying it was.

Well, you go through these moments where you feel like you're, like you might be crazy here,

that it might be in your head.

Things, when you have doctors telling you that they can't find anything wrong with you,

that this is coming back okay and that's coming back okay.

You can see it in people's eyes.

Like they're disbelief or they're just thinking, oh, she's making this up.

And then you start projecting that, well, am I making this up?

And is there some part of me inside of me that doesn't, that I'm,

that I'm not where I'm not realizing that like I want to be sick or physical.

Yeah.

Am I wanting like somewhere in the deep recesses of my mind to be sick?

Do I, I'm trying to get attention or, you know, like you go through all of that,

like where it's, you see people, you see people, you see it in their eyes

and you hear it in their tone and in their questions.

And then you think to yourself, well, maybe I am.

Maybe I, maybe this really is just in my head sort of thing.

So that's, you know, that's a difficult part of it.

And that kind of leads to a little bit of hopelessness when you spend here trying to find an answer

to what's going on and there is no answer that comes.

And so when, when we got the muscular dystrophy diagnosis,

there was some relief because it was like, okay, I'm not crazy.

There really is something wrong.

I'm not, I'm not making this up.

But then it's like, but then when you realize at that point with what he was saying I had,

there was, there was no treatment.

It was the, the conclusion of that doctor's visit was go home, live your life.

Best you can be as happy as you can.

And I've been, you start to decline some more.

Maybe we can get you some physical therapy.

But that was, that was the extent of it.

And did that kind of give you a time?

Did they give you a hint?

Like, maybe about 10 years?

So when we went, I said, so how long does this last?

I mean, is this thing?

And he, the doctor was a great, I thought he was a great doctor.

And he was very knowledgeable and he was very quick.

And he, but he was just to the point.

And he's like, five, 10, 20 years, I'm not sure.

And so that's what he told me.

And that was 12 years ago.

And what did he say was going to happen?

Slow the grace, like, yeah.

Just slow muscle.

Till she becomes an invalid and possibly right, die on a ventilator.

Her lungs would not be able to function.

I want to know what you felt husband.

And please don't solve for any of these people.

I was in a car with you.

So when he told me, I said, yes.

So like, but then, but I didn't once again.

Why'd you say yes?

Because I'm in, because we finally, it was a relief.

It was a relief because there was a time when I didn't think there was anything going on.

And then things started happening worse and started progressing bad.

And then people were running up to me.

And like, you and Miss Betty start talking and we were at a camp, a church camp.

And Kelly just dropped.

She just fell down.

And I don't like attention, but people around.

And she was embarrassed.

And they told me and I had to run over there and find out.

And you know, I mean, you have to deescalate the situation type thing.

And so, but then you see your wife and she can't do just normal stuff.

So when we finally got the diagnosis, it was a relief.

But then after that, when you start studying about it,

you start watching videos on YouTube, praise God.

It can put you in a dark place.

Kelly, did you see him going through that?

I think that he, some, I think he tried to be strong around me.

I think he probably saw that more than, more than I did.

You, Miss Betty, probably did.

Yeah.

So how much of, why God, why me?

On bad days, I still do it.

There went, yeah, I would say on days when I feel.

I feel a little more weak or if there's.

There are other parts to the disease that are a little more embarrassing to talk about.

And when those part, when those days come, you know, it's a little harder.

It's a little harder to go through and to think about and to, you know.

After I got saved when I was 17, I grew up in a church 10 years hearing the gospel.

And so, he rejected the Lord for 10 years.

And so after I got saved, I thought, you know, I mean, I really just, he's been so good to be.

So gracious to let me hear again and again and again and again and reject and reject.

I really just want to do, I just want to do something for him.

And so in my mind, I thought, I thought maybe the best thing that I could do for him was to go and serve him on the mission film.

And so.

Well, I met you. I believe you were a mystery Albania.

I was, yes, or I was on deputation trying to get to Albania.

I didn't get the, I didn't get the support raised in the time that the missionary, that the mission board required.

So I figured I needed more training. So I came to you.

So yes.

And so when y'all met, everything was, did you already know it's almost wrong?

Or could you feel it?

I didn't really notice anything was, I didn't notice.

There weren't noticeable symptoms until you had higher enzyme or liver reports.

So you knew there was something.

Yeah, but I mean, the doctors said that I did have elevated liver enzyme, which the neuromuscular specialist to tell us was part of the problem.

It was, was, was a symptom of Pompey disease.

It was indicating the, the breakdown of muscle.

But I didn't realize that that's what it was. I'd gone to, I'd had some tests and a biopsy.

And the doctors then had told me that it was, that was just, it was just normal for my body, the elevated enzymes.

It's still not clocking. It's just something wrong.

No, we, I didn't start really thinking anything was wrong until after Charlotte was born.

And I never regained my pre-pregnancy strength.

And it started that then when I started having noticeable, even for me, noticeable difficulty climbing stairs or getting out of chairs, that was when it was hard.

So I was 30 when that happened.

And so when, when I was 17, I really thought that I'd try to get to the mission field.

And so I think you asked before, were there why, why me moments and why God, why this?

And it was, and it's written like a big one for me would be that I had spent, I had spent every, all of my saved life trying to, trying to get to the mission field thinking that that was how the Lord, like that was the best thing that I could do to serve the Lord.

I mean, I understand now that the fallacy and, and that thought that, I mean, that I could serve the Lord and do something to honor him no matter where I am.

But at that point, like it was just, it was a dream, like that, that was my dream to be able to serve the Lord on the mission field.

So like the why me moment really came in the loss of that, that dream, like, I mean, I didn't understand, you know, I wanted to serve you on the mission field.

Like, nobody else wants to do that hardly ever. I mean, hardly any people want to do that.

And you're going to, you're going to take that for me, rob me of that, you know, which is, which is not correct biblical thing, you of course, you know.

So okay, it doesn't matter what's correct in the moment. And here's a beautiful thing. Our father knows you and loves you. And when you said that, he said, I gave you free access.

I think to me as bold as you want. And I won't get offended because I love you. You're my, you're my, you're my beloved daughter.

Well, today's podcast has been a little bit maybe on the darker side. We're going to get to the things I think that will help you.

Because Robert and Kelly live a life full of grace, loving and serving God and happy and blessed and what God's doing.

And I know that's what you want. All of us live in a sin cursed world. Every one of us live on a borrowed day. None of us know when we're going to die.

And none of us are guaranteed good health. But God gives grace. Now something I say all the time to you is we are followed by mercy.

Surely goodness and mercy does follow us all the days of our life. And so don't miss the next session when we will get into more of that and Lord willing.

This will last a whole week of you getting to hear how God is working in the lives of Robert and Kelly can feel. Thank you very much.

Thanks for listening to followed by mercy with also garter. If today's message spoke to your heart, share it with someone who needs to know.

God hasn't given up on them. Remember your pain is at the end of your story in Jesus. It can become praise. Thank you.