Traveling with a sick child can be daunting, but for Taylor Conner, mom to Kendall battling a rare disease, it was nearly impossible. Taylor joins Jess Ames and Maddy Beck to share her heartfelt appreciation for the Angel Flight experience. She discusses how this vital service helped Kendall, who battles mitochondrial disease, travel safely to receive necessary medical care without the stress and burden of a long drive. This episode dives into the immense challenges Taylor faces when traveling long distances with Kendall for specialist appointments. Kendall’s fight is ongoing, and research is critical. Learn more about this disease and donate to Kendall’s research fund at the United Mitochondrial Disease Foundation.
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Introduction
Welcome back with another episode of the show. You’re here with me, Maddie.
Also, me, Jess.
In this episode, we have Taylor, the mom of one of our passengers with us.
Thanks for having me on.
Kendall’s Story
Thank you. Do you want to get started by telling everybody a little bit about Kendall’s story?
Kendall is my daughter. She’s nine years of age. She is battling mitochondrial disease, more specifically Leigh syndrome. Leigh syndrome is genetic, although non-inherited. From Kendall’s position, she was a de novo mutation, which means it was a happenstance gene mutation. That caused her to regress when she was two and a half years of age.
She was normally developing, and at two and a half, she started showing signs of in-toeing, losing her balance, falling, and then not being able to walk. For the past couple of years, we’ve been on a journey for a cure. We’ve been on journeys for treatments. We’ve done a drug repurposing study. We’re continuing to do different things and clinical trials to try to help Kendall be able to stay stable until there is a cure.
Angel Flight Experience
We’ve had the pleasure of meeting you and Kendall at Wings Field. We all instantly fell in love with Kendall. We are so happy we’re able to help your family. How did you hear about Angel Flight? Tell us about your flight experience with us.
I found you guys by Googling CHOP aircraft for medically fragile children. The reason why I did the search is that we had an appointment at Children’s Hospital of Philadelphia, and that’s nine hours away from Charlotte, North Carolina, which is where we reside. The experience was wonderful with Angel Flight. We had two different pilots. They were both excellent. They were small aircraft, but the pilots were fantastic.
With the ride up there, one of the pilots played music for us. It was really calm and soothing on the way up. On the way back, we had another pilot who was a little bit more talkative. We had some thunderstorms to contend with, but it was sweet that he said a prayer for all of us before we took off. We made it back. You really can’t appreciate enough how much of a gift it was for someone to be able to take their aircraft, their gas, and the donations through Angel Flight to be able to make that happen.
You said it was nine hours for you guys if you had to drive.
With Kendall, one of the things that is a problem is medicine and feeding. At least six hours of my day is spent trying to feed Kendall and make sure that she gets the proper hydration and that she’s drinking anywhere between 26 and 30 ounces a day. To be able to not have to worry about who’s in the backseat and trying to find somebody to ride with us and make sure that she’s drinking alleviated so much stress.
How much time was the two flights total?
Each flight was probably about two hours. It took us seven hours. We were seven hours ahead of the burden of staying in traffic or worrying about Kendall because I was able to sit in the back of the plane, feed her, hydrate her, play games with her, and talk with her on the way to Philadelphia and back.
If you didn’t have Angel Flight, would you continue making the drive or would you find alternate care for her?
I don’t know what I would’ve done without Angel Flight on this occasion. We’re going through a separation and I’ve been given temporary custody of the children. It would’ve been hard. We’ve always done things as 3 or 4 of us. This was a different set of circumstances. Trying to find an easy way to get the chop, Angel Flight was an angel in this case.
The impact that Angel Flight has had on patients all across the board is so insane to me. For example, I am on my way home from a conference in Lancaster. Lancaster is an hour. It’s just me and I’m a perfectly healthy 20-something-year-old. I’m like, “I don’t even want to do that hour and a half, let alone nine hours with a medically fragile child.”
We’ve done the nine-hour drive before to CHOP. It’s tough because it usually takes about a week’s time. Nine hours doesn’t even compute because you can’t really do nine hours straight with a medically fragile child. You stop and plan your trip. I was planning my backup trip before Angel Flight said, “We’ve got you.” My backup plan was to drive from Charlotte, stay north of Richmond for the night, and then try to go four more hours the next day to Philadelphia.
You can't do nine hours straight with a medically fragile child. You stop and plan your trip.
That would’ve been two days to get to Philadelphia, and then she’s in a day of doing complete appointments or all-day long appointments. It started at 9:00 and we ended that day at about 4:45 at the hospital. It’s then going back the next 2 days to try to get home the same way, which is 4 hours, stay overnight in Richmond, and then try to get back to Concord, the Charlotte area.
Having Angel Flight come to the rescue to say, “We can get you there much quicker and much faster,” and the toll that it takes on Kendall was a burden lifted. Even that 4 hours is 8 hours. Even though you might be driving four, we take breaks. We try to get her out of the car and try to stretch her legs and walk a little bit. We let her have her walker. We didn’t have to worry about any of that. A big thank you. From the bottom of my heart and from the bottom of Kendall’s, we couldn’t thank you and be so much more appreciative of doing what you guys did for us.
Croc Charms Fundraiser
You had also given us our little Croc charms that had Kendall’s website on it. Can you talk about that? You’re raising money to raise awareness about her condition or to find a cure.
I’ll give kudos to Callen, who is Kendall’s brother. He’s fourteen. Middle schoolers were really into Crocs the past few years. In 2023 during spring break, Callen came up with an idea to fundraise. He made these little mitochondria that go into the Crocs. For Kendall, we modified her braces and made holes in the braces so they could join her in affixing to the Croc charms.
We gave these out at the Symposium in 2023. We’ve given them out to different people that we come across. When I refer to the Symposium, UMDD, the United Mitochondrial Disease Foundation, is the foundation where Kendall’s research fund is held. The Croc charms though have been great because it has been able to drive awareness on what is mitochondrial disease and what is Leigh syndrome.
It also goes back to the website to explain things to whether it’s parents of children or the children themselves to say, “What’s going on with Kendall? Why is she not able to walk like the rest of us? What’s going on?” It’s an easy way for them to go and learn more about the disease and what we’re doing for research. With the research that we’ve done, we’ve done a drug repurposing study. If you go onto that website, it’s UMDF.org/KendallConner.
The Kendall Conner Research Fund on UMDF, if you Google it will pop up and tell you a little bit more about Kendall’s journey and some of the things that we’re dealing with. One of the things I didn’t mention is seizures. That’s something we really don’t like to talk about. It’s not been talked about too much on our website. I’m hopeful that they’ll go away. It’s another stressor. That would’ve been who would’ve been in the backseat with her not only trying to get her to drink and eat but if that happens, where am I going to pull off? The pilots were fantastic. We were fortunate that we didn’t have any terrible episodes on the trip.
Notes From The Flight
I know that you had mentioned bringing some notes home with you from your flights about how everything went and things like that. Do you want to talk a little bit about that?
Sure. As I was on the flight, I was writing some things down. These were jotted notes, but I could not thank Angel Flight East enough for helping get Kendall to CHOP. It talked about how the previous trip took more than 9 hours, which was 1 week when you think about it. It was 2 days up, 2 days back, and 1 day at the hospital to go for that visit. We did this in a day. We did it in a couple of hours, 2 hours and we were there and 2 hours back, which was huge. You’re not looking at a full week of driving to get to CHOP. That’s part of it.
The other part of it was commercial flights were not an option in this case. The commercial flights would’ve been packed with 100 to 200 people on a flight. For a child with mitochondrial disease, one of the things that all the doctors have told us with the Mito specialists is, “Try to keep your child healthy. If they get sick, then they decline in certain areas.”
We’ve noticed Kendall before decline not only in her mobility and ability to walk but also in her ability to speak. Her speech is not where it was a few years ago. She talks with an iPad. Sometimes, if she can’t be understood on the third try, she’s able to use an iPad to communicate. Things have changed. We would not want to risk her health to put her on a commercial flight with possibly 100 to 200 people on it. Angel Flight East removed that stress. We’re very thankful.
That’s amazing. I’m so happy you found us.
I’m so happy I found you.
Is there one final thought you want to leave our audience with?
For your donors, supporters, and your pilots, I want to say thank you. It meant the world to us to have the ease of getting to medical care that’s needed for your child. They did research at CHOP. The Mitochondrial Frontier Program is one of the top and leading programs for mitochondrial disease in the country. We want to be there. We want to see the best doctors and specialists.
It means the world to us to have such easy access to the medical care your child needs.
Casual Interaction With Kendall
Kendall is also 1 of 2 individuals with this particular gene mutation living in the world. We had two other individuals when she was four. The other two children passed away during the COVID timeframe. One was in Italy and the other one was in the UK. Our hearts sank a little bit knowing those families and knowing the children. It makes it more real that your child’s one of the few standing.
We’re trying to get the best research we can. It’s tough because we’re not something that is affected by a lot of children. When you’ve got a super rare diseased kiddo, the research is not there because a lot of people don’t know about it. You’re trying to drive awareness for your kid so the right researcher might listen to a story, a podcast, and anything and say, “We might have something that could help your child.” Getting that message out is super important. Also, getting her to those mitochondrial specialists is super important because there are not a lot of doctors who even know what Leigh syndrome is.
Wrap-Up
Thank you so much for sharing your story. I really hope somebody out there reads this and has some more extensive research behind it. You’re right. That is such a scary and hard thing when you have a child who has such a rare disease that there’s not any medical backing to it yet.
Your organization really took a lot of stress off of our shoulders to get her there. It made it so much easier for Kendall to not have to endure 9 hours of drive time and 1 week to get to the right medical professionals. Thank you.
We are Kendall’s biggest fans.
Thank you so much for sharing her story.
Thank you again for having us.
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