Battling a genetic disease in a rural area with no access to care can be challenging. In this episode, we meet little Declan and his mom, Elisabeth Wheeler, who shares their extraordinary journey flying with Angel Flight. Born with a rare genetic disease, Declan faces health challenges and requires regular medical care in New York City, far from their rural home. Thanks to Angel Flight, they now have a lifeline to reach the specialized care Declan needs. Tune in to this touching conversation where we explore their heartwarming experiences with Angel Flight pilots and the profound impact it has had on their lives. From the remarkable resilience of a brave little boy to the incredible support from a tight-knit community, join us as we celebrate the power of compassion and the life-changing difference it makes for families like Declan's.
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This is our third episode of the show with our passenger, little Declan, and his mom, Elisabeth. Could you tell us a little bit about Declan's medical condition and how you found Angel Flight?
Declan was born with a genetic disease, a mutation in the gene ATP6AP1. He's one of 31 people. We didn't know about it until July 2022. His body doesn't break down protein the same way ours does, which results in inflammation in his body. He has issues with his liver. He has immunodeficiency issues, so he gets infusions every fourteen days. We have to travel to all of his doctors. He gets all of his care in New York City. Locally, there's nowhere that knows about his condition or treats it.
Especially with it being that rare.
He is one of 31. It took a very long time for us to get a diagnosis for him.
How did you figure out what it was? Did he have any specific symptoms that they were looking at?
We were traveling. We were down in the Lehigh Valley area. My grandparents, we were visiting them and he had this flare-up episode. We were unable to wake him up. He had a super high fever. He wasn't acting himself. We went to the hospital down there, which their area is much larger. They have a bigger medical center down there. We were telling them the history because locally, he was admitted sixteen times before they found an answer. We happened to be down there and they were like, “We think he has a lot going on. We're going to refer you to Columbia.” Our first visit to Columbia was in July 2022. That's when we had a diagnosis and we’ve had treatment. He's been doing fabulous since.
That's awesome. We're so happy to hear he's doing well.
I don't think we've been hospitalized since January 2023. This is the longest he's gotten his whole life.
That's so exciting. You guys have taken quite a few flights with us. Do you know how many it's been in total?
I was thinking about that before I hopped on. It has to be 7 to 10, at least. We go again soon.
Do you know who your pilot is?
I don't know who our pilot is. We haven't had him before. We're staying the night. He's our pilot for Wednesday and Thursday.
That's nice. We've never had the same pilot on different days, so that will be nice to know who's coming and going.
Do you have a particular flight that was one of your favorites?
Every experience has been so good. Michael Bush wanted to take us so many times and every time something came up. He had to cancel and we had to find a new pilot. The last time he took us, Declan had left his hat on his plane. He took the time to mail it back along with toys and gifts for him.
That’s so cute.
Declan, when he goes in those planes, they let him look at everything and touch everything. They give him a good experience. I don't think he'll ever be able to fly commercial because he thinks he's the coolest.
We used to fly this little boy from Greenville, South Carolina up to Philadelphia. He was around Declan's age when he first started flying. He would go back and tell everybody in his classroom that he had his own private planes and pilots. They basically do.
That will be Declan. Every time we see a plane in the sky, he points and then tries to follow it. I'm like, “We're not going today.” He'll never ever be able to fly like a regular passenger. We usually fly into Teterboro when we go to New York. Even they have been so good to Declan. When he goes there, they know we're coming in advance. They always have gifts for him and snacks for him. Everybody we have come across since starting flying with Angel Flight, it's been the best thing for us. It is so helpful to us.
That's awesome. Before you guys got involved with Angel Flight and you guys got that referral to Columbia, what was your plan? How were you going to get there?
Drive. My husband and I have five sons.
That's a lot of boys.
Declan is our youngest. I don't do well driving in the city. Especially in the beginning, it was very stressful because he was having so many tests done. It was always hard to get there. My husband would drive me, and then we'd have to find childcare for the other boys. Being able to fly gets me there so quickly. It has been a huge weight lifted off my shoulders that I don't have to drive there or try to drive, find parking, and all of this stuff, and also transport him and all of the things that he needs. It was going to be stressful if I had to drive.
We live in Philadelphia, and I don't even want to drive downtown, so I can only imagine New York.
We live in a very rural area so I'm not used to traffic. It's staying overnight. We always come with a whole bunch of stuff. Parking is always a hassle in the city. If I was to go alone, it would be one more added thing to worry about. It's one less thing I have to worry about being able to fly.
"Parking is always a hassle in the city. It's one less thing to worry about being able to fly."
Are Declan's brothers jealous that he gets to fly privately all the time?
The others have had a chance to come with us. I had my son Max. He never flew before and he was able to go on a flight with us. The pilot let him sit in the front. We took pictures. When I tell you everybody is so good to everybody who comes with me, it's amazing. They do get a little jealous. I have one, and he wants to go to New York City so bad. He doesn't understand what we're going for. He thinks it's all for fun.
I know flying with a toddler, in general, is terrifying, or traveling anywhere. Even a grocery store is terrifying. What's it like to go on a small plane with a little guy?
He's so used to it. He'll hop in right before me. He loves it. The first few flights were a little scary because it is small. It's 4 to 6 people seats on the plane. We have experienced turbulence a couple of times, especially in the winter. This past winter was pretty scary a couple of times, but our pilots were super reassuring and always like, “This is normal.” We get to wear headphones so we can hear what's going on. My husband is a little more scared than I am. He has been a couple of times, but he would prefer not to fly. He's a bigger guy, so he doesn't like the small tight feeling of being in the plane.
We had somebody call in. We were explaining Angel Flight to them. They thought it was a commercial flight. Once we said four seats, she was like, “No, thank you,” and hung up.
It's like riding in a car, but it's a very quick ride to the city. Forty-five minutes is all it takes usually. It is a positive experience.
What is one final thought you would want to leave our audience with?
How grateful I am and my family. Your organization has changed Declan's life and my life. It's been life-changing. It saved his life being able to go down there and not having the expense of driving down there. I can't say enough good things about what your organization has done for my family and other families but what I see other people post on Facebook because I follow your page. It's the biggest experience that I've had in my life.
That’s awesome. We’re so happy to hear it. Declan, we're so happy to have you. Thank you so much for sharing your story. We appreciate it.
Thank you so much again for all you do.
Thank you. Have a good day.
He's so cute. I didn't know he had such a rare disease.
More importantly, can we talk about how he has four siblings?
I can't even think of having one boy, let alone five.
I thought that Elisabeth was our age. I don't know if that puts into perspective that we're older than we think we are.
We can never say we're tired again.
She has five kids. I'm terrified and tired for her.
I hope she drinks coffee. I feel like we should send her a case of Alani Nus.
We better. We have to think of something.
She needs it.
Also, Declan is so darn cute.
I know. No wonder his flights get filled so quickly. How could you say no to that little kid?
We build his pictures into every flight request we send out for him so that way, people see his cute little face hanging out the window and they want to help more. It's so exciting to be able to help somebody that has such a rare disease and be so in a rural area and have no access. Let alone going to the hospital locally sixteen times and not having an answer is wild.
What a small world that they were down here and the hospital here could diagnose it.
I know. That proves we have a purpose.
I love hearing the pilot stories because Michael Bush would never tell us that it was his hat or something that he left and he sent him toys with it. I was like, “Why do you never tell us this?” They're so humble. That was so cute. I love hearing the rural stories because it does show what an impact our pilots have on people.
I hope that they're all reading. Pilots, if you guys hear us, thank you for what you do. I know that it means the world to Elisabeth and Declan. We wouldn't be here without you guys.
Also, you should brag about yourselves so we can stop bragging about you for you. We hope you tune in for the next episode. I'm still looking at where this show is going to be broadcasted besides Apple Podcasts. It is on my list to do, but I'm probably going to give it to Maddie. She's more of a Millennial.
Pretty sure anywhere that you tune in to show, you can find us. When in doubt, go to our website. We'll see you there.
We will see you next episode.
Have a great day.