Above anything else, it’s the touching stories from passengers that keep us alive and inspired here at Angel Flight East. And Tami Gaines has one heck of a story to tell. Her son, Trey, is a twin preemie who had a lot of complications that need special care for his whole life. An ultimate super mother, Tami would do anything in her power to provide for her son’s needs, but it’s a very challenging task to say the least. When she found Angel Flight East, everything became a lot easier for her and her family. Her encounters with the organization have even inspired her to start initiatives to help the families of kids with special needs. Tune in and learn more about Tami and Trey’s story and why we should never underestimate the value we bring to the world as Angel East pilots.
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We would like to welcome our guest Tami Gaines. We have flown her son, Trey a couple of times. If you are comfortable, can you tell us about Trey's condition and how you found Angel Flight East?
I'll tell you about his condition when we found you because his condition now thankfully is different. Trey is a twin preemie. They were born at 25 weeks weighing 1 pound, 12 ounces each. It was apparent from the very first hour that Trey was going to have pretty serious complications. He was on a ventilator and had a trach, oxygen dependent. He eats through G-tube. He just had a ton of equipment and a very poor prognosis. Every time the trach came out, he would die on the floor of his bedroom. He was always in danger because he had no airway. This was going on for like the first 4 or 5 years of his life. I finally said to my favorite neonatologist, Dr. Mimms, “If this were your kid, what would you do?”
This is unsustainable. I have three other kids so it's not just bad for Trey, but it was bad for all of us. We were always living in a constant state of like, “Is he going to come back?” Dr. Mimms said, “If I were you, I would go out to Cincinnati Children's Hospital where the world's leading airway repair surgeon is, Dr. Cotton. I would go see him.” I made the call, we had a phone chat with his nurse and they said, “Trey's a great candidate. You have to get here.” At this point, I'm a single mom with four kids, an ex who’s not providing any financial support whatsoever. I was in my city, New York City.
I was in this city at a Starbucks talking to my cousin on the phone explaining the situation. I started crying and she was like, “We'll figure something out.” We got off and I was walking out. This guy stopped me and he was like, “I overheard your conversation.” I was like, “What is this going to be?” He was like, “There are organizations that do medical flights. They take kids that are extremely fragile and adults. They fly them to their doctor's appointments in other states. The name is Angel Flight. See if you can do a Google search and find it.” I did. I found you. Just for perspective for people, before you, we took air ambulances.
That is insanely expensive.
Air ambulances that had a nurse on board in addition to the pilot and the copilot, we flew on a stretcher with all of his equipment. That was a very long story, but that's how I got to you.
Long story or not, it is always going to be my favorite how you found this story.
I feel like that was divine intervention because that was one of the lowest moments in life in general. I don't know how I'm going to help this kid and these other kids. It came at exactly the right time when I needed like a little bit more motivation that this is going to be okay.
I hope somebody tunes in to this eventually and comes to us and was like, “I was the person who told her,” because I always wonder who it was.
I remember exactly what he looks like. It’s literally emblazed on my mind. I wish I knew who he was also so I could thank him. We were in New York City, so I was also like, “All right, cuckoo post.”
You never know what you're going to get in the city.
I was on the bus, I was googling, and was like, “That guy was right.”
You've taken quite a few flights with Angel Flight. Can you tell us about your favorite one?
No favorites. Don't do that.
You flew with Norm Clemmer once, didn't you? He's always a fun one to fly with.
You've probably flown us 8 times, maybe 9. I can't quite remember but I'm not going to name names because I appreciate all the pilots. They are compassionate and patient. When Trey was little, there was not a lot of interaction going on. Now he's fluent and a little bit older, they're like, “Do you want to sit up front? Do you want to put the headphones on?” He says just yes to everything. He has autism among other things, but it's been a beautiful journey, watching Trey grow with these flights and his interaction with the pilots. We have pictures.
Honestly, I don't have a favorite. I just have a bunch of amazing memories that each of them has given us. Everything from like, “You probably haven't eaten,” and they gave me Panera. They had Panera waiting. I hadn't eaten in three days. There was a pilot. Our ride didn't show up and he was like, “Let me just get all situated and I'll drive you to the hotel.” That was so nice.
It’s so funny because they’ll never tell us those little tidbits of how they go above and beyond until a patient tells us. We'll call them and be like, “I can't believe you didn't tell me that.” They just do it because they want to help.
Sometimes, the pilots come with their spouses or their partners and their kids so that's even more fun. On one of the last flights I had, I started chatting with the wife who was just getting her PhD in Psychology and she was curious about the psychology of everything that we were going through. That was an amazing memory. We chatted for two hours just about life and how that happens and then we exchanged information so we can keep in touch.
I feel like our pilots become the biggest part of these support systems for everybody involved.
You guys flew us out. We were supposed to be back in five days and the operation went horribly wrong. We were stuck out there for eight weeks. The pilot called me every couple of days just to check in. I called and say, “We're not going to be there. I don't know when we're going to be there.” He is like, “Whenever Trey's better, I'll make sure I get there to pick you up.” He did.
This always makes me feel so much better about our jobs at Angel Flight.
Don't ever underestimate what you're bringing to the world because it's incredibly important.
I know you mentioned that Trey had flown in an air ambulance a couple of times. If it wasn't for Angel Flight, would you have continued that? Would you have driven or just missed your appointments completely?
Once Trey was stable enough, the air ambulance wasn't even an option. Before I ever knew you guys existed, I drove him to Cincinnati by myself for a normal trip. It would probably be like a ten-hour drive maybe. It took me 23 hours because I was by myself. I had to keep stopping. I ended up having to get a hotel room because I was so exhausted. I did that drive three times. That's when I was telling my cousin, “I don't have it in me. I can't do that drive again. It was nuts.” He was on a ventilator. I had to stop because I had to do medical care every 45 minutes. Never an option not to go to his treatments because that would mean he wouldn't be here with us now. That was never going to be an option.
"If you’re an Angel Flight pilot, don't ever underestimate like what you're bringing to the world because it's incredibly important."
I feel like this is the perfect definition of moms being superheroes.
If I could fly, I would've flown him on my back. We just do what we got to do and now, you guys are all part of that, which is great.
That leads right to my next question. Can you tell our audience a little bit about Indigo Kidz?
The twins are 17 now in 2023. I've been doing it the hard way. I had this idea in 2015 that I should start an association for families that have kids with special needs and surround them with resources that they don't normally get. Insurance is awesome, but they don't cover everything. They can't tell you certain things. My friend Sharon Webber and I decided to start an association for families that have kids with special needs. It's called Indigo Kidz. We're just soft launching right now.
There are a couple of big buckets of help that we realize families need. One of them is resources. You can't rely on Google. You want to make sure you have solid resources that talk about, “Here's how you get through an IEP meeting. Here's how you can manage your other siblings when this is going on.” Another bucket is travel, which is where you all now fit in. Traveling with a kid with special needs, which I've flown commercially with Trey, is really hard. We partnered with a travel partner who only flies special needs families.
They do door-to-door and concierge. All your special requirements are worked out by them, which is great. There's a whole parenting piece. It is like a university for parents which is all sorts of courses. I'm like, “Here's how you get through this.” The idea is that we just put together about eight different services that would change families if they had help and it's not stuff you can easily find any place else. That's OurIndigoKidz.com if you want to check us out.
There are so many amazing resources out there for families and I don't think they're talked about enough.
They're hard to find. The way I met Sharon, my partner, is that she was Trey's family coordinator when he was six years old. That was her job back then. Her job was to come to these meetings and offer resources like, “Do you have food in the fridge? Is your electricity going to stay on? What do you need?” Her job was, “What do you need? I could help you find it.” That's part of the system that's really broken, like access to information. The fact that people don't know you exist. A lot of people do, but most people probably don't, because it's a treasure map. Finding the help that you need is crazy.
"Part of the system that’s really broken is the access to information. This is demonstrated by the fact that many people don’t know Angel Flight exists."
You can get lost in a deep dark Google hole that you'll be in for three hours and not find the right resource that you were looking for.
You find out that it's like an ad for something else. It's not even a resource. It's like, “Click here and you'll get a free screwdriver.”
Every time I give a presentation about who we are and what we do, I always tell people my biggest goal is to make us not be that ad on Facebook where it's like, “Look at how cute these shoes are.” You go to a website and it's like Shein where you might get your size. It might fall apart. I promise we're actually what we say.
It's so true though. That's when we were building out the association. I was like, “We need to have verified information.” One of our services is professional services like access to lawyers, accountants, and financial planners that specialize in the special needs community. We already vet them. That's the problem with Google. You could look at some reviews but at the end of the day, you do want someone to talk to these people and see if they're legit, if they can do what they say they're going to do.
Unlike Craigslist, which is where they found me.
Sometimes Craigslist works. Craigslist was only had back in the day.
Years ago, it was a great referral source. I wouldn't trust it now, but years ago, it was legit. You get Craigslist to sponsor us. I'm a Craigslist successor. Can you tell our readers what your experience was like flying in a small airplane?
I've had many experiences. I lived in Charlottesville, Virginia for a couple of years and that was the smallest airport I've ever seen. The planes were tiny. They only held 8 or 12 people. That was my first experience. That airport was so small. I could call on my way to the airport and say, “There's fog and I'm on my way.” They would hold the flame because it was so too small. They'd be like, “Tami's on her way.” Everybody did it. I had a couple of really scary experiences because of bad weather and those planes bounce around a lot more than when you're in a big giant plane.
I was hesitant when I took my first flight with Trey and the pilot met me in the hangar and he is like, “Let's go out to my plane.” I'm like, “Where's your plane? That's your plane? It's so cute.” I was scared. I'll be totally honest, and I’m not a good flyer anyway. I had Trey. I'm like, “If something goes down, this guy better save Trey instead of me.” I had all of that in my head. Anyway, it ended up being an amazing, super smooth flight. They're all extremely experienced and I'm not afraid anymore. I would rather fly the small planes now than the big planes. It was good. The only hitch is you have to make sure you don't have more than 40 pounds of luggage.
That's always the hard part. I feel like every lot of people show up and they're like, “You were serious.”
I had to ship stuff and FedEx stuff from the hangar because the problem is Trey has so much equipment and he eats a special diet. It's cans of food. For every can of food I bring, it's one less pair of underwear for me. By the time I get all of his food and equipment packed, I have a pair of jeans, a T-shirt, and the clothes I'm wearing. Thanks, Trey, for that.
I agree though. I would much rather fly in a small airplane just because I like to see what the pilot's doing. In a commercial airplane, if you hear a weird noise or you hit a bump, you're just like, “I hope this is okay. I don't know what's going on up there.”
Here's a benefit that I've never probably even told you, but the last time you flew us, Brea, Trey's twin sister, came. She has never come to Cincinnati before, mostly because it's too hard to manage both of them at the same time. Now she's older. She's in high school and she's interested in technology and engineering. We were chatting with the pilot and he was like, “Why don't you sit up front?”
She was like, “What?” She sat up front. She flew the plane for a few minutes like she had the headphones on. She could not stop talking about that which is great because mostly, up until recently, her life has been literally in the shadow of Trey. I thought that was such a great moment here with Trey and it's not all about Trey for change. That was amazing. She wrote an essay about it. That's how moved she was. She's like, “I might want to be a pilot.”
You should check out STEM Flights. They are an organization that uses small planes and lets kids come, explore, and find out what it's like. It's a lot of fun.
That’s mind-blowing. She's going to lose her mind.
That being said, what is a final thought that you want to leave our audience with?
I have a general thought, which is, just hold onto possibility. When you think there's no way out, a way will be made. It's possible. The fact that I met that guy in Starbucks, how did that happen? Except for divine intervention. I don't even drink coffee. I was in there to get some water. Always believe that there is a way. If it feels like there's no way, a way will be made and Angel Flight is part of that way. I am forever indebted to you all for what you do. If there's ever anything I could do for you, I will gladly do it.
Tami, you always inspire me with your words of encouragement and wisdom.
That's what you hold onto when you're in the darkest moments. That's what keeps going. I appreciate that.
We were on your podcast days ago, Tami's Table, so if you want to hear us, you should go listen to that one.
It's amazing. It was so great. There's a story to be told. At first, the producer was like, “What's the angle?” I'm like, “They saved my kids' life. That's the angle.” Beyond that, there's a lot to talk about, but they loved it. I thought you guys were phenomenal and I hope you'll come back on again. That was great. Thank you for this. I love chatting with you.
"Just hold on to possibility. When you think there's no way out, a way will be made."
Thank you so much for your time.
We'll see you at Wings N’ Wheels.
Absolutely. I'll see you in September 2023.
Have a great day.
She's so cute.
She's so encouraging. I'm like, “Do you ever have a bad day? You make me never want to have a bad day.”
I don't know how she does it. She makes me think that every mom has a superpower. By superpower, I mean all superpowers.
"Every mom has a superpower."
What she had to endure with Trey and the cost of an air ambulance since the beginning is crazy to think about.
I didn't realize that part. My brain is still spinning, trying to collect the air ambulance with twin little guys and two older kids on top of that. There are so many moving parts.
His flight photos are always so cute. He looks so happy.
I'm so happy to see how successful her podcast is in telling her story and Trey's story. They're awesome.
It comes full circle too. I always love people saying they want to do whatever they can to help us, but also, we want to do whatever we can to continue to help them and promote her nonprofit and all the great work she's doing.
I want to know more about this flight partner they have who provides flights for special needs kids.
I feel like they need to be our friends too. We do need more friends.
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Do you think people are sick of us yet?
I don't know. It's only been a while.
It's only been four episodes. I hope they keep subscribing.
Don't unsubscribe. My personality can't handle that. Ignore us instead.
I have to share an office with her and I don't want her to be cranky.
I'll be so sad. I would take that as a personal attack.
That's why we have high news in our fridge.
Don't tell the boss.
PS, Jess is my boss.
I might have put them there.
He might have.
Now I'm going to get in trouble. I hope our board's not tuning in.
If they are, we'll share.
We appreciate you continuing to tune in to us, especially at the end. We hope you think we're a little bit funny and entertaining. I do.
Either way, we can't wait to have you again in the next episode. See you then.