Episode 3: Grace in the Pit — When Chronic Illness Hits Your Children

What do you do when your greatest fear becomes your daily reality? Robert and Kelly Canfield return to the podcast to share the next chapter of their journey with Pompe disease—the moment they realized their daughters would also face this lifelong battle.

In this episode, Austin Gardner talks with the Canfields about:

• The Physical Toll: The reality of muscle biopsies and ongoing infusions.
• The Emotional Struggle: Dealing with envy and "why them and not me?" when seeing others on the mission field.
• The Redirected Path: How God traded their dream of living overseas for a powerful ministry of "Taking the Light" to others in the midst of suffering.
• A Message for Caretakers: Robert shares a direct word of hope for those feeling the weight of caring for a sick spouse or child.

"Surely goodness and mercy shall follow me all the days of my life"—even in the valley of the shadow of death.

Connect with us:
Website: https://waustingardner.com
Subscribe to the "Followed by Mercy" podcast for the rest of this 5-part series.

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Transcript

Suffering And Calling Reframed

Austin Gardner 0:29

We're in the middle of Robert and Kelly Canfield's story. We've been talking about Pompeii disease, and we've been talking about how God gives grace, and it's been a wonderful time. I think you're enjoying it. I know you are. You have to be. The Holy Spirit's brought you to here to watch, and He's also speaking to your heart with your situation. And today I want to focus, Robert and Kelly, on how though you've been through the pit, God has given you tremendous opportunities. And you have spent how many years again with Pompeii that you've known?

Kelli Canfied 1:09

2014.

Austin Gardner 1:10

2014. So that's twelve that's 12 years right here. But in those 12 years, talk to us about ministry. How many times have you gotten to speak? And uh maybe your ability to deal with the disease even opened the door for you to speak.

Kelli Canfied 1:29

I would say the majority of the time that I've been invited to speak, it's been on dealing with suffering or some or some sort of calamity or something, so I would say that I would the majority of the time that I've been able to.

Misdiagnosis And Early Biopsies

Austin Gardner 1:42

And God's opened that door many times. And in many places. And that would not have happened if you weren't suffering. So it's easy to it's easy to come up with the idea, boy, poor me, uh, and play victim. Uh do you feel like a victim?

Kelli Canfied 1:59

No, not at all. No, this I mean the Lord's been far too good to us in all of this for me to play victim, for me to feel like, woe is me. He's just he's been really good to us in all of this.

Austin Gardner 2:15

And Robert, do you feel like a victim? Sometimes I might, I'll be honest. Well, I want you to be honest. I think people people listening, they they can spot fake.

Robert Canfield 2:26

Yeah. I haven't I haven't always responded well, and I've done wrong, and but you you you brought up the thing with ministries and stuff like that. I think one of the biggest things was is Kelly said 2014, since she had Pompeii, but she was diagnosed with limb girdle before that.

Austin Gardner 2:45

Am I well what is that disease exactly?

Robert Canfield 2:48

Well, limb girdle is just a form of muscular dystrophy where your your legs, right? Your limbs, your arms, and the and this area right in here loses strength. And um you just become an invalid. Pompeii has like you said, at the first session or the first uh one that we did, it it just the same areas affected, her legs and stuff like that.

Austin Gardner 3:11

Um it's just a different reason why why it's but so y'all dealt with that before you dealt with Pompeii.

Robert Canfield 3:17

Yeah, and so when the when the doctor told us that Well, how how far back was that? That was over 14 years ago, it was 14 and a half years ago, or maybe even more than that. Almost 15 years ago. It was 15 years ago. And so we we were told we had limb girdle, and then we're like, yes, and that's when you asked how long, and they said 15 or 5, 10, 20 years, we don't know. And then so I was like excited we're we were excited that we had a name for it. And so Kelly obviously she asked, like, so what do I do? And he said, Well, you just try to, like she said, have a good attitude, and and then he referred her down to the muscular dystrophy clinic there at Emory University. Did he not? He said, You you could go there if you wanted to. He was not, I mean, he didn't really say these are the steps. Because he did he thought he had it, right? Well, yeah, he I mean He thought he'd figured it out.

Kelli Canfied 4:04

Yeah. He said that we could do gene therapy or we could do genetic testing to figure out exactly what what kind, because there are multiple kinds of muscular dystrophies. Um, but at that time, insurance didn't cover it as an elect, it was a it wouldn't be medically necessary, and at that time genetic testing was exorbitantly expensive.

Austin Gardner 4:24

I'm sure it still is, but yeah.

Kelli Canfied 4:26

So we just left it at that. You know, we we just accepted that it was limb girdle.

Robert Canfield 4:30

So she wanted to figure out what she could do, and she wanted to figure out so whenever you go to doctors, right, they always have to oh that's great that he diagnosed you. We want to do our own diagnosis. And so we went to the muscular dystrophy dystrophy clinic there at Emory, and we had several musc muscle biopsies there.

Austin Gardner 4:47

And that's people listening don't know what that means. So, Callie, would you describe a muscular biopsy?

Kelli Canfied 4:58

Uh they it's where they take a core sample of your muscles.

Austin Gardner 5:01

What does it mean they take a core sample?

Speaker 5:03

They sliced you up my thigh open about that much and took a slice out of my thigh muscle and sewed it back up.

Robert Canfield 5:14

So they they cut out a big chunk of they did that one and the other one they did like a core sample, right?

Kelli Canfied 5:20

Mm-hmm. Which means what they drilled a hole in? It's like a screwdriver, but they take a core of your muscle, right? That so it's not just a top layer. So they went down. That was uh painful? It was. It was painful.

Austin Gardner 5:33

It's still sensitive. It's still sensitive till today. When it's cold outside, I can So some people feel the cold in their bones.

Kelli Canfied 5:41

I feel it in the scar tissue that's surrounding where they took that biopsy.

Robert Canfield 5:46

When people go through sicknesses, it's not always the sickness that's that always they have to struggle with. You know what I mean? Sometimes it's the procedures, sometimes it's the symptoms, sometimes it's just like you're at the hospital by yourself. I remember when she had that muscular that muscle biopsy. I was like all by myself sitting down there. I was like, no one cares. You know what I mean? And so it's it wasn't the disease like that. Let's stop right there.

Austin Gardner 6:08

No one cares. That is about as normal a thing to think. And I think the people listening would maybe feel that. Uh I felt that. I mean, and I know it's not true. Yeah. You know, you I know it's not, I'm y'all have cared. The Lang and Faith have cared, the people at my church have cared. I'm I'm not saying nobody cares, but boy can come, can't it?

Robert Canfield 6:29

Oh man, I'll I'll never forget. She was in the the the operating thing, she was having the procedure. They put you under?

Kelli Canfied 6:36

They did, like a twilight kind of thing.

Robert Canfield 6:38

Yeah. And so I'm sitting out there in the waiting room all by myself, and I'm like, there's nobody here with me. And like, it's like my mind went to the negative, you know what I mean? Just went to the no one's here with me. Boo-hoo, you know what I mean? And that that's just a no- I don't know. I know some people go to the hospitals and they don't have anybody that around them. And a lot of times you just feel like there's no there's no one that no one's here with us. You know what I mean? This is just this is just us. And it wasn't just the disease, you know what I mean? It was just then I guess the consequences of the disease that plays with the person's mind and heart. It's like the whole thing. And so we did that, and um me as the husband, and this is not my but I remember I'm like, I gotta pay for all this stuff. And that that put me in a tizzy. I would like run out to the mailbox before she could and try to figure out the bills so she didn't have to worry about it. So it wasn't just the the disease that that was a big issue. She even brought up like insurance. There was insurance problems. She had like there would be months. Is it my fair say months? At least at one month, several treatments that you would miss while I was waiting for prior authorizations, yes. So we had to deal with that frustration. So you deal with the finances and you deal with like there's nobody here, and it's just like, I mean, it's not just like, yeah, I got musc uh muscular dystrophy, or yeah, I got Pompeii disease, and that's or I got this disease that that just plays with the person's mind and heart. It's like it's just so multifaceted.

Grief Over Lost Mission Dreams

Kelli Canfied 8:26

It is, and I do want to go back. I I did say that you asked me if I if I'm tempted to live as a victim. In general, I'm not. But and looking back, thinking through these things, I am reminded of some times where um where I had really had to struggle, where I struggled a lot with. I talked to you about how the loss of the of the dream of doing of living on the mission field and serving on the mission field, and I I dealt a lot. We we were in a church where it was very heavily missions focused, and uh ever I mean, lots of people were going to the mission field, and I dealt I dealt a lot with jealousy and envy for um all the people that would get to go, and I'd have to stay behind. Um a lot of times there were some particular circumstances where I mean I was even angry at uh I I would know of other women who had a bad attitude about about getting to go, not wanting to go, and having to go because that's what their husband wanted to do. And I would just, I remember I'd just be so angry at them, not to their face or anything, but just internally, and then I'd be angry with the Lord, like, why are you letting her go when she doesn't want to go? And I've like, and I've begged you, you know. So there are times where where that victim mentality did come up. But um with the Lord's grace and help, that's fewer and further between now than it was in the early days.

Austin Gardner 10:04

I'll come back to that in just a second. Uh but uh something that I'm thinking about right now is uh you had one more massive dark bit of news to hit you. And I I know you know even now what I'm talking about, but our listeners probably don't. Uh you found out you have Pompeii's disease, you found out that it would limit the length of your life, probably. You found out you would be dealing with junk all your life, financial issues all your life, and then one day you notice something with your daughters.

The Daughters’ Genetic Twist

Kelli Canfied 10:47

Yes, so Pompeii disease is a genetic disease, and um so we uh we were we already had Charlotte and and by the time we found out that I had Pompeii disease, um, but it's genetic. So um we talked to the doctors about do they need to be tested? Um, and the doctor said, well, the the the chances that they would have this disease are astronomically slim. Um it and and it is true, like it's very rare for it to be a parent child. It's usually parent grandchild or parent uh nephew or niece or something like that, the way that the genetics work. And um so we didn't do anything about that. They said the only way that it would even be possible is if Robert were a carrier, but we didn't get him tested either, because again, genetic testing.

Robert Canfield 11:39

Takes both of you to have the genetic. It's a rare disease. I said this is a rare disease.

Kelli Canfied 11:44

One in 40,000 worldwide.

Robert Canfield 11:47

Like in was it the last State of the Union that Trump had in his first term, he brought up the person that had Pompeii as a rare disease to use in the State of the Union. So it's it's not something that's normal that most people have.

Kelli Canfied 12:00

Yes. So with Anne, our second born, I started noticing some things that she just, I mean, she met all the milestones. So the doctors weren't worried, but she didn't meet them in the same in the same time frame that Charlotte met them. She met them later than Charlotte did, the walking and moving, and she always felt a little more soft.

Austin Gardner 12:24

I don't know how to describe it, um, other than the firmness of muscles.

Kelli Canfied 12:30

And there were some other things that she struggled that I felt like I saw a struggle with with her, and so I had to go through this whole process in my head as am I projecting this onto my child? Is this really true? Is this like, am I is this in my head? Am I thinking this or am I just seeing things because I'm looking through things in a filter that nobody else looks through? And so I got to the point where I couldn't put that out of my head anymore. I couldn't dismiss it. And so then I was like, Robert, what do you think? And so I had to wait for him at that point. I I felt like anyway, I had to wait for him to do to go through that whole process of, you know, we're just projecting. I he had to go through the whole all those stages. And so finally he got to a point, at least from my point of view, and he can share his where he I felt like he was at the same way. He's like, okay, let's just go and and get her tested.

Austin Gardner 13:20

Before Robert talks, uh, one question. One of the things I seem to remember is that when you bounce a baby up and down, they jump on their feet, but Ann would just not throw her feet down.

Kelli Canfied 13:31

I think so. I think if I remember that right, she she she was later to walk. I mean, it was still within the normal range, but she didn't she wouldn't bounce up and down. Uh she would yeah, I do remember that. Um and so we went and had her tested. And I I already like in my heart, I already knew that it was gonna come back. So the the fact when they called and said that it is Pompeii, and I mean, the my genetic counselor said, you know, because you're mom and we trust mom's instincts, we'll test her. She said, but I I will let you know that the chances of her having this are gonna be Zilch. Zilch. Like nobody was expecting her to come for it to come back as her having Pompeii. And so um, so I was like, okay. And the way that it so that that showed us then that Robert is a is a carrier and I have the disease, so that means that each one of our children would have a 50% chance of having Pompeii or 50% not having Pompeii. Um, so for to get to get that diagnosis for Anne, it wasn't a shock to me in my mind. Uh it was real rough, it was real rough for Robert. Um, but then because Ann had it, we had to test Charlotte because she's a sibling. That one was the hard one for me when we found out that Charlotte had it. Not that I love her more or Anne less. I just I had already resigned in my mind.

Austin Gardner 14:58

At least one. Could I have one itself?

Kelli Canfied 15:01

Yeah, yeah, yeah. Well, I and I had already resigned in my mind that Anne had it. So it that would, but to find out that Charlotte did as well, when she had firm muscles and she walked early and she did all of these things, it um that one really shocked me through before a loop. And I do remember um we were uh the church, you you and Miss Betty and the missionaries and the church were so gracious and kind to send us away to Disney World, and that we got Charlotte's quick phone call about Charlotte while we were at Disney World in the hotel room. And um, and I do remember going to Robert and just telling him how how sorry I was that um that he had that he had married me and that he has to deal with not just a wife that's sick, but kids that are sick too. Um which is not the right way to think because you know God formed me exactly how he formed me. He gave me the genetic, the DNA that he gave me, he gave the girls the DNA that he gave them. Um but in that moment that was real difficult dealing with Charlotte like that, yes. Um and again I knew, like in my heart I knew, and so it was more like okay, we're gonna face this, we're gonna get this done, but that shock was was hard.

Austin Gardner 16:22

Robert, what would you feel?

Processing Two Positive Diagnoses

Robert Canfield 16:29

I guess I still feel numb. You gotta deal with a issue at hand, which is you wanna encourage your wife. Needless to say, we I think we ended that trip a little early. Nobody wants to to give their kids something. That they're gonna struggle with. Nobody wants to cause our kids' life to be harder. I know I'm evil. I want to give my kids good gifts. You ask me how I feel. I don't I try not. It's one of those topics I try not to think about. We have it pretty good. When we go to the the doctors who get checkups and they have other kids there with Pompeii. And they have an adult onset, which means it's later on in life and it's it's we're it's it that we're learning that with uh advancement medicine that's manageable. And there's other people there that they really struggle with like a live type thing.

Austin Gardner 18:39

Because if they have infantile, they die shortly, don't they? It just doesn't affect their muscles, it affects their hearts.

Kelli Canfied 18:47

When we take Charlotte and Ann to the muscular dystrophy clinics at the at children's, they um the doctors they're all just very pleased with how strong they are. They're like, you're the they tell them every time we every time we go, they're like, you're the strongest kids we're gonna see today. So the Lord's been good to us even with their strength. He's allowed them to be really strong girls.

Robert Canfield 19:09

Yeah. But there is a lot of people around the world that there's hurting. And you when you go there and you mean you see them. And uh can't help but think that, you know, God loves them too. And so I I don't know what to say about all that.

Perspective From Clinic And Outcomes

Austin Gardner 19:27

I like I said, I don't I think it's a good time, Robert. Uh, you currently I I won't I've asked you over and over to let people know why you don't live on the mission field and your missionary raising support. And I thought when I decided I wanted to interview you, I thought this might be a way people would find out the real story. You could say to them, watch the videos, and you'll get our real story. So tell us the name of your ministry and what what you do just a little bit. We don't have a lot of time in today's broadcast.

Robert Canfield 20:01

Yeah, it's it's called Taking the Light Ministries, and like like Kelly said, we had the dream to go and to the minute the mission field. It was in your heart. It was in my heart. You wanted it, both of you did. We planned the path. I th I felt like we were accomplishing the the goals that were necessary in order to accomplish the desire of going to the mission field and seeing churches started and people's lives being changed and the gospel going forward, but our feet got directed in a different path. And um I preached a message about David and how he too had a desire to see something for God. He wanted to build a temple, but God had other plans, and so he didn't get to build the temple per se, and it's not it wasn't David's temple, but he provided all the materials and he provided all the blueprints, and God still gave him Jesus, and God was still a great God, and he's still a great God with us, and so we're just trying to do what we can to help missionaries and national pastors get the gospel out to places. You're still answering my question. Why can't you go to the field? Why can't I go to the field? Well, I gotta take care of my family. I gotta take care of my wife and daughters. Tell them what goes on with you.

Kelli Canfied 21:16

So I have to get an infusion uh of that enzyme I don't make enough of. Uh they they were they figured out how to make a synthetic.

Redirection To Taking The Light Ministries

Austin Gardner 21:25

Thank God for the thank God for the medical advances are astonishing.

Kelli Canfied 21:32

Yes, yes. So I get an infusion.

Austin Gardner 21:34

So where are you getting your treatments mostly?

Kelli Canfied 21:37

At home.

Austin Gardner 21:38

Is it Duke or is it Emery both of the Emery oversees?

Kelli Canfied 21:41

Uh Duke is where um Duke is where the origin the the very first um the very first enzyme medicine was was created. Um but Emory oversees uh my treatment and my care. Um but they let me get my infusions at home because I've I've adapted so well to the infusions, and so uh one of my best friends gets to give me my infusions every two weeks, and it's a it's a the infusion itself is four hours, but the whole process of mixing the medicine and monitoring it's about a six five to six hour long.

Austin Gardner 22:14

And you do that?

Kelli Canfied 22:15

Every two weeks.

Austin Gardner 22:16

Every two weeks?

Kelli Canfied 22:17

It's an IV infusion.

Austin Gardner 22:18

What happens if you miss it?

Kelli Canfied 22:21

Uh if I miss one or so, it's not that big of a deal, but uh once you start infusions, you're on them for Life. And those people who have opted or have not been able to keep their infusions because of insurance reasons or things like that, after about after a few weeks worth or a couple months, you they start to see dramatic declines. So it's it's a necessary thing for me to have these infusions.

Austin Gardner 22:51

Your family has been racked with both daughters, both birth daughters have the disease. You're a carrier, you have to have infusions. So it's obvious that God redirected your path. You're still doing the same thing you would do. Fact is, you've lived overseas, Kelly. For what, how long?

Kelli Canfied 23:14

We lived in Peru doing an internship as far as as part of our training and preparation for six months. Um and I had spent um a summer in Albania before I met Robert.

Life On Infusions And Care Logistics

Austin Gardner 23:25

And then also you've you make trips. You just have to plan them around your fusions. And so, Robert, you still hit the field regularly, but again, everything has to be planned around a disease. Life does. So let me let me let's end this. Give me the encouraging word. Tell our listener who's dealing with maybe it's cancer, maybe it's Pompeii, or maybe it's Addison's disease, or maybe it's another. It could be any number of diseases. And they're hurting. And you really can be an authority here because I think what you got and what's going on with your family is up there pretty high. So what would you say if you were saying to them, listen to me, here's some encouragement?

Kelli Canfied 24:14

Um I'd say that your story's not finished yet, that God would He'd love to be able to work in your life and to use you and to use the story that he's writing with the things that you're going through to help others and to use the comfort wherewith he's comforted you to comfort others.

Austin Gardner 24:42

Sometimes, Robert, because I deal with my problems that my wife is my caretaker, I think it's worse for you than it is for me. It's worse for you than my wife suffers in a way I don't suffer. So can I have a word of encouragement for those who have to take care of a spouse?

Robert Canfield 25:05

I would say uh word of encouragement that um God hasn't left you, He's with you, He's teaching you. And if you come at it with His power and His Spirit through His Word, and you come at it with joy, I mean you can have a sweet time still. Um the first question you asked at the beginning of this session was is what ministries have you done? I think it's great that Kelly's got to speak to a whole bunch of different people, but I mean we've got to we we've been in a a room full of doctors and geneticists and they're saying stuff and we're like, wait, wait, wait, this is what's God. We've got a lot of people that that's been praying for this. I mean, we think that sometimes the biggest ministry platform is saying something in a church. But I mean, we've got to see God work great and and tell other people that don't darken the door of a church. And we get to display, you know what I mean, to our family that we're gonna have joy in this too. And they can wonder, like, why how can this person have joy? And it's only because what Jesus has done in our hearts, that's the only reason why. It's because we have hope, not in just this life, but also in the life to come. And so um I would say the caretakers, I mean, just draw the nigh to God, and he'll draw an eye to you and use it for his glory because the things that's happened is to manifest his power and his strength. And so that's what I would say. I don't know.

Encouragement For Patients And Caregivers

Austin Gardner 26:40

You know, as we close today, I just want to tell all of you that God came from God, Jesus, and was made human flesh, and he lived among us so that he feels every pain you're going through. He feels every desperation, he feels every hurt he cares about you. And uh, you are not alone. And if you'll just trust Jesus, who died on the cross to save you, was buried, rose again to give you eternal life, to let you know the Father. And I just want you to know that you have a you don't have a Savior who's not feeling he can be touched with the feelings of your infirmities. So if you need help, I want to help you. Uh you can get in touch with Robert and Kelly and get in touch with myself. We want this to be a blessing to you. And I thank you for listening. Let me remind you, you are followed by mercy. The Bible says, surely goodness and mercy shall follow me all the days of my life. And no matter if I walk through the valley of the shadow of death, I don't have to fear evil because he is with me. He's got a rod and a staff, he's going to beat the enemy with. He's going to take care of you. So we love you. God bless you. Thank you very much.