When caring for a loved one with a medical condition, the last thing you want to worry about is figuring out how to get to where you need to be. Angel Flight lifts this burden from families. In this heartwarming episode, join Maddy Beck and Jess Ames as they share an inspiring conversation with Beth Leduc, a dedicated mom navigating the complexities of her son’s medical condition. Christian, diagnosed with a rare genetic disorder, requires specialized care in distant cities, making travel a significant challenge. Enter Angel Flight – a group of dedicated pilots providing free flights for medical patients in need. Beth recounts her transformative experiences flying with Angel Flight, detailing the support, care, and community they've found in the process. Tune in to discover the profound impact of Angel Flight on families navigating the complexities of medical care.
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We have a passenger with us from Angel Flight Northeast, Christian Leduc and his mom.
Thank you for having us.
Thanks for joining us. Do you want to give our readers a little bit of background about Christian's story?
Christian is now over four years old. He turned four in September. In 2020, at the height of COVID, he was diagnosed with a condition called leukodystrophy. It's a genetic condition. There are about 50 or 52 known identified types. It's very rare. As we were navigating a new diagnosis, we were trying to figure out the best doctors and where we needed to go. One of the things that we were faced with was how to get where we needed to go.
Christian’s specific leukodystrophy is called TUBB4A or TUB-related leukodystrophy. As we were navigating everything, we found a doctor in Philadelphia who discovered that the gene mutation, which is the TUBB4A gene was disease-causing. We started doing a lot of research about that facility at Children's Hospital of Philadelphia. We started thinking like, “How are we going to get to Philadelphia?”
In the midst of that, we found a doctor in Boston at Mass General who ran a leukodystrophy center there. Boston is much closer, but still a ways away. we're in Vermont. Boston is a 3 to 4-hour trip. If you want to travel to Boston even for a 1 to 2-hour appointment, that's an entire day of travel right there. We had known a local family who had a kiddo that was medically complex. I called them. I said, “You guys used to fly with a group called Angel Flights. I need their number.” I got Angel Flights number and then we started flying with Angel Flights.
Our first flight was on December 21. It's been that long that I have to think back. We've been navigating things for a while. One of our first trips was going to Philadelphia and Angel Flight was amazing. I was navigating a world I knew nothing about. I called Angel Flights. From day one, they were extremely warm, welcoming and understanding. I immediately felt like I found an amazing support system. They figured out our flights and arranged ground transportation.
The only thing I needed to be concerned with was figuring out exactly where I needed to go, but I didn't have to worry about how I was going to get there, which was a huge relief for me. It allowed me to focus on the important thing, which was caring for Christian. It took the pressure of figuring out how am I going to get where I needed to be and being able to get places quickly because I have another kiddo. Traveling with Angel Flights allowed me to get where I needed to go quickly, easily, and get back in time to be there for my other kiddo.
How often do you have to travel for Christian's treatment?
It ebbs and flows. In the beginning, we traveled a little bit more because we were trying to establish our team. Now we have a very large team. We go to Philadelphia 2 to 3 times a year. We go to Mass General about twice a year. We have added specialties at Boston Children's. We go there I would say 2 or 3 times a year. It’s 6 or 7 throughout the year roughly.
They keep you busy.
We are definitely like frequent flyers. I don't realize how much we fly until I see it in writing, and then I'm like, “We've been on a lot of trips.” It's become good for us. The thing is that I tend to be a little bit of a nervous flyer. It's not my favorite thing. He thinks it's pretty funny. Everybody I've worked with has been amazing. It's not the pilots or anybody like that makes me nervous. It's flying itself. Everybody has been super reassuring, kind and accommodating. I couldn't ask for anything more, especially when we're navigating something that's new.
As a nervous flyer, when you first found out how Angel Flights work, being small general aviation airplanes, were you at first, “You want me to get in a when and where?” or were you just, “This is what we have to do. Let's go for it.”
It’s a little bit of both. I was like, “That's the plane. I don't even know how to put all of our stuff on there because we don't travel light. The Christian is a car seat and a stroller. He has a suction machine.” We have all of this stuff and not to mention the food and my bags. I was like, “I don't know how this is going to work.” The other piece of it is I had a choice. I could stay where I am and get treatment where I live, which is not a bad place at all. Vermont is very small. The reality is if we wanted to see a specialist who had the experience that we needed, then we needed to travel outside of Vermont.
I made a decision like, “This is it. I have to deal with it here we go.” As we're flying, I do still jump a little bit as we hit air pockets and such if there's turbulence, I definitely get nervous, but my trick is to always look at the pilot and if they don't look panicked, then I feel like I can breathe a little bit. Everybody has been so kind and great to our family. I call and they know immediately who it is. Once I say, “Hi,” I'm even able to at this point share videos of what Christian's up to when he's not traveling. He did horseback riding. He ended it because they broke for the winter. I was able to send a video like, “Christian started horseback riding.”
He's going to try adapted skiing. I'll be sending videos. I feel like it's like an extension of our family because they get to know me. It's been a great support system for us and a great feeling to know that you're taken care of. Your kiddo is taken care of. You're in good hands. We've had many pilots. In the beginning, I had one specific pilot for my first few flights, and then I met somebody new. I didn't realize how big Angel Flights was until I started meeting a lot of new pilots then I was like, “I can't believe I haven't met you. We've been flying for X amount of years.” It's always funny to me when I meet somebody new. I'm like, “I forget how big the group is.”
It's like nonstop because there are many of us. Angel Flight East Alone is one of 60 different public benefit flying organizations in the country. We all work together. the Angel Flight East pilots, sometimes we'll fly for Angel Flight Northeast, but sometimes they don't that's fine. It's funny because we'll help each other with different flights and you're like, “There are more pilots.”
I always say, “Thank you for all you do and for what you do.” The response that I always get is, “It's the least I can do.” I feel like the least you could do is nothing. You don't have to do this. You could do less. These resources choose to help. They choose to take time out of their day. They choose to offer support. When you're navigating life with a complex kiddo or any caregiving situation, when somebody takes something off your plate, that's huge. I don't have to worry about the travel.
I don't have to say, “I have to pack up my car because I have to drive to Boston tomorrow. I need to make sure I know where hospitals are in case we have an emergency or in case of whatever.” it takes so much pressure off. When Christian was first diagnosed, when we first found the doctor in Philadelphia at CHOP, I was mapping out how long it would take us to get there. it was a nine-hour drive. we have another kiddo. At the time, my husband and I were both working full-time. It was like, “How are we going to figure this out?” It turns out I had to make a phone call.
We were talking about this yesterday, how humble the pilots are and they think they do such a small task of helping people where from the outsider and the patient perspective we're like, “You don't understand the impact that you're having on families like yours because you would have to make that nine-hour drive and maybe you could do it once or twice and then you may be are like, ‘This is way too much. Let's find treatment locally,’ that might not be the best care for Christian and his diagnosis. This opens up a whole new world of opportunities for him to get better.”
Because of my connections with Angel Flights, I've been also able to share their information with other local families who didn't know about the group. The thing that I think is also amazing, and I didn't even know this in the beginning, that Angel Flights didn't just help kiddos. They help adults as well, which is something that I've been able to share with people who are struggling to figure out how they're going to get to certain hospitals.
Especially in Vermont, we’re close to Boston, but from a driving perspective, it's still a decent trip for a 1-hour appointment and 3 or 4 hours each way. You're talking about an entire day spent traveling. When I fly with Angel Flights, it's 4 to 5 hours collectively. That's there and back and my visit. It cuts that time down much that you can have a better balance regardless of your situation. If you're navigating a world and with any medical complexity or when you have a lot of appointments, it's hard sometimes to find that balance between living your life and going to appointments all the time. If you can cut some travel out of that, it helps that out a lot.
"If you're navigating a world with any medical complexity, it's really hard sometimes to find that balance between just living your life and going to appointments all the time. If you can cut some travel out of that, it helps."
Jess and I were talking about how big states are in general. Even if you lived within the same state, you're still like, “It's still going.”
It's so much. One of the biggest things for us is how are we going to get where we need to go and get there quickly. Our appointments are not like an emergency situation like we have to get there within an hour, but it helps create that balance when you have other kiddos and other things going on, to be able to go somewhere and back the same day and not have to figure out even more. In addition to navigating appointments and finding the specialists and all of that.
Do you have a favorite or most memorable flight you've done with us?
My first was the most memorable because I was fearful. I was nervous. I get a little bit nervous now, but it's old hat at this point. We've so flown much. I'm trying to think of one specific instance. It's hard because I think of who's been the nicest, but everybody's been the nicest. It's hard to think of one specific case where anything's been super special. Everybody's been great. One of the most memorable experiences is we went to Boston. We're in the airport and this person walked by and they looked like Shaquille O'Neal.
There are not a lot of lookalikes of.
Not only that, as he was walking, I was like, “There's no way he looks like him and is that tall?” I stopped him and said, “Will you take a picture with my kiddo?” He was like, “Give me your phone quick.” We took a picture with Shaquille O'Neill. I can't believe I had forgotten about that, but I guess that was the most memorable it. The funniest thing about it was, he was on his way to a game of course, but right after I was on my phone calling my husband and calling everybody. I know you'll never believe who I saw. I can't believe I totally forgot about that. Everybody in the airport, like all of the workers was trying to not be phased by it. I was looking at it. I was like, “Oh my gosh.” Everybody else was playing it coo, but I was totally starstruck. I literally called my husband. I was like, “I saw Shaquille O'Neal.” I was sending him a picture. That was an extremely memorable experience. I can't believe I've forgotten about that. Things tend to blend together I think in my days and my travels.
You have enough of them.
One of the other nice experiences we had was being able to meet all of the resources who answer the phones. We got to fly into the office one day and say hi. They featured Christian stories when they did the Angel Flight gala. We flew in and we got to meet all of the people that we call and say hi to fairly regularly. It was nice to put faces with the names and the voices to say thank you in person and for them to meet Christian, I feel like it puts a different perspective on things when you meet and you make those connections in person for so long because of COVID and I don't want to project. I know a lot of people were very careful, but I felt like we lived aside from everybody else for even a little bit longer given our situation. it was nice to finally get out and meet people face to face more and make those connections.
"It puts a different perspective on things when you meet and make those connections in person."
I feel like that's the other benefit of flying with Angel Flight. going from having to be in those super public areas to now being in such a safe environment with the pilot. It's just the pilot and you guys.
The other piece of it was for me it was scary enough to go into these hospitals with all of these people and all of this risk. When we started flying, it was still in the midst of everything and going to these big cities and these hospitals and I was fearful of, “Who am I going to get near? Where am I going to be? Where he could be exposed because he's not able to mask?” That was always intimidating. That's a good point being around less people felt safer. I would've never gotten on a commercial flight.
Even a rest stop or a gas station is just as scary sometimes
Large airport because of course as when we fly, we fly into where the pilots go. You can keep a distance from people. You're not shoulder to shoulder with a bunch of people in crowds and all of that. I definitely feel much safer. Even now when we don't take as many precautions, it still feels more comfortable because we still have to be a little bit more cautious than some people and take those things into account.
I almost wish they would've kept the mask mandate in airports because I didn't realize how not sanitary people are. You had to sit right next to people on a plane like shoulder to shoulder without wearing a mask. I'm like, “Can you please cover your mouth when you cough or seize because I felt droplets on my arms?”
It's one of those things I feel like pre-COVID, but now we're like, “I think it brought retention.”
You are hyper-aware of it now.
I always sing Angel Flight's phrases, but something else that's nice that I didn't even know they did. When we started flying that first Christmas, we had all of a sudden on our doorstep we had this big box. I was like, “What is it?” I googled the name on the return address. It was addressed to our family. I googled the address. It was the address of the CEO, like Hasbro or something. I was like, “Who is sending us this stuff?” We opened this box and there were two presents for each of our kids, which I thought was such a nice thing. I called the family whose number I had originally gotten Angel Flight's number from. I was like, “Did you guys get this box? We got this box of gifts. Is this typical? I felt guilty about taking them.”
They were like, “Yes, they do it every year.” I thought that was nice. It was a little something extra that they do that brings more joy It's like an extra step and that extra step shows how much the group is invested in not only getting us where we need to go but also sending an additional hug, which I thought was nice and kind. Every year my kiddos each get two little gifts from them, which is nice. It's such a nice thing that they do and we love it.
What's one final thought you want to leave our readers with?
Just an immense amount of appreciation for Angel Flights and what they do and how grateful we are to know them and to have them in our lives. It's been super life-changing for us. When you're navigating a lot of medical complexities, knowing that you have support is huge and having somebody who can take some things off of your plate and help you get the care that you want for your kiddo is huge. A ton of appreciation, thankfulness and gratefulness.
"When you're navigating a lot of medical complexities, knowing that you have support is huge."
We appreciate you sharing your story and having Christian, our little special guest.
He loves his Angel Flight family.
We appreciate you guys so much. Thank you for joining us and we'll see you soon.
Thanks, Beth.
Thank you.
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