I'm Aware That I'm Rare: Lindsey and Josh Belt

In January of 2013, Lindsey and Josh Belt’s 5 year-old son Joel was diagnosed with a severe lung disease called idiopathic pulmonary hypertension (PH). Since Joel’s diagnosis, the Belts have been on a mission to spread the message of HOPE! In 2013 & 2014, they hosted Color PHor A Cure 5K to raise awareness for pediatric PH research. The passionate desire to spread hope and raise awareness for PH also led the couple to create The Anchored In Hope Shop. 

Transcript:

Josh:

Joshua Belt from Jennings, Louisiana and my wife Lindsey Belt. 2013, our son was just having some complications breathing and we thought it was asthma. Over the course of a couple months we tried different things to try to fix it. It wasn’t helping. Then we went and saw our pediatrician one day when Joel was doing pretty bad and he said, “Something’s wrong with your son’s heart, you need to go get an electrocardiogram.” We went off to a bigger hospital, they did an electrocardiogram and came in and told us our son had cardiac heart failure and they weren’t exactly sure what it was. That night they actually had an ER doctor that actually new of PH and came in and said, “Hey, I’m pretty sure I think this is what it is. We don’t know why he has it, but we think your son has pulmonary hypertension.” We got life-flighted a day later to a bigger hospital, which later confirmed that he did have pulmonary hypertension.

Lindsey:

He was newly diagnosed. You want to help, you want to fix your son, you want to do something, and so got him the best doctor and medication. You can only do so much. We just felt like we need to give back, we need to let people know we need to do something. One night just sitting down we said, “Let’s do a 5K, we can do this, let’s do a color run.” It just went from there. Our community got involved and it just picked up and was huge.

Josh:

I think when we heard how little there was for pediatrics, we just felt like we can’t just sit back and do nothing. We’ve got to do something. Literally just a couple phone calls to some good friends and said, “How many of you would be interested in helping us put together a fundraiser?” We had overwhelming support and they said, “Let’s do it,” so we said, “Let’s go.” The rest is history from there, so it took off. Six months into the treatment of his PH, doctors told us he had a year left to live, just pretty much said, “Let’s just try to give him the best quality of life as we possibly could.” One of the big transitions was actually trying to find even another doctor that could help us out and maybe even give us even a little bit more hope. That was a big transition, we went to another hospital, found a different doctor that really helped us there. Then of course, through that, we just had a lot of ups and downs, even with his health.

Lindsey:

He was not doing well. We had heard about this thing called a Potts shunt. It was done less than ten in the United States for pediatrics and for PH. Our doctor got a lot of opinions said, “Now’s the time.” We went to another hospital that we didn’t even know anything of, but came through this surgery and he is doing incredible, so much better. He’s not in heart failure anymore. He couldn’t run before, he couldn’t play like he wanted; now he can. We’ve been through a lot of ups and downs. We’re on more of the upside.

Josh:

Three line changes. There’s a lot of different things there.

Lindsey:

He’s strong and he’s a fighter for sure.

Josh:

He’s in a really good place right now. I don’t really understand how anybody could go through this journey without some system of people that surround you that can encourage you. For both of us, Lindsey’s an encouragement to me and I try to be that to her, but what do you do when you’re both down? I think just surrounding yourself. We’ve just found some people, our church family is one of that, even our own city is even a part of that, and then of course close friends and family that just know when we’re walking through some rough times, what to say. Sometimes not even what they say, just the fact of just physical presence and just being there for us has been astronomical for us to be able to walk through some of the roughest times of our life. When those days get rough, we have people close enough to us that know, “Hey, they need us,” and so they’re there in a heartbeat. I don’t know how you do that without having some hope from people that can give you some hope when days are rough. When you hear the statistics of a child that has gone undetected or has had a wrong diagnosis for so many years, and then you see what that does in a child, and the life expectancy that’s shortened because they were misdiagnosed for so long … Of course as someone who wants to extend a kid’s life as much as possible, or an adult, or whoever has PH, I think when you realize, “Hey if we can get this out there, and people can become aware of it,” that gives them a better fighting chance then if we can have early detection, there’s maybe some things that they wouldn’t have to go through. You’re going to do everything you possibly can, and then of course to have a son who’s gone through that, and we don’t know how long he had it, but to know if we could have caught it earlier what would have happened. I think we tried to do everything we can to raise as much awareness as we possibly can for other people to detect it early and give them the best fighting chance they possibly can have.

Lindsey:

Also, it’d be great to … When you come across so many nurses, “I’ve never heard of this before,” or even some doctors were so blessed that this one ICU doctor knew what it was, and when you find out how rare it really was … To have more medical professionals knowing about the disease, especially going into an ER with your child and you know more than them. It puts you in an awkward role. Hearing parents’ stories of misdiagnosis and stuff, it’s just heartbreaking. I just want as many people to know about it as possible.

Josh:

I think oftentimes the diagnosis too, can be debilitating. Even communicating a message of hope to people is not only just for the people who don’t know that they have it, but for those who do have it. I think to be an encouragement to the PH population and to let them know, “Hey, we’re fighting through this with you. We’re standing with you as well.” I think you often see the negative side of PH often, and so I think we always want to be one that comes on the other side and gives the encouragement and says, “I think you can keep fighting.” If our family can show strength and encouragement and that can encourage another family wherever they are in the journey, then it’s totally worth it. I’m Josh …

Lindsey:

And I’m Lindsey and we’re aware that we’re rare.

Listen to “I’m Aware That I’m Rare: the phaware™ podcast” at www.phaware.global/podcast. Learn more about pulmonary hypertension at www.phaware.global. #phaware