Tiny Travelers: Trips with Complex Care Kids

Podcast Transcript

Speaker 4:

Welcome to Little Health, a Cleveland Clinic Children's podcast that helps navigate the complexities of child health one chapter at a time. In each session, we'll explore a specific area of pediatric care and feature a new host with specialized expertise. We'll address parental concerns, answer questions, and offer guidance on raising healthy, happy children. Now here's today's host.

Dr. Mayme Marshall:

Welcome back to Little Health. I'm your host Dr. Mayme Marshall, a pediatric cardiologist at Cleveland Clinic Children's, and the Director of Patient Family Experience. For the division of Cardiology and Cardiovascular Medicine.

Traveling with any child requires planning. But when your little one has a congenital heart disorder or other complex medical needs, the planning becomes significantly more involved. Today as we begin our season on pediatric cardiology, we're discussing how to prepare for safe and memorable trips with our complex care kids. Our guests today are Eileen Lane, Executive director of A Special Wish.

Eileen Lane:

Hi. How are you?

Dr. Mayme Marshall:

Awesome. We're so happy you're here.

Eileen Lane:

Thank you.

Dr. Mayme Marshall:

And we also have Natalie James, one of our Cleveland Clinic Children's Healthcare Partners.

Natlie James:

Hi. Excited to be here.

Dr. Mayme Marshall:

For our series on pediatric cardiology. We are teaming up with our healthcare partners. This group offers a team approach, including medical providers, parents, and patients that analyze and advocate for better healthcare experience. We welcome our healthcare partner today, Natalie James. Natalie, will you introduce yourself?

Natlie James:

Sure. Um, so my name is Natalie James. I am a mother of two amazing heart warriors. My three-year-old has single ventricle physiology and my six-year-old has a VSD. I'm also a heart warrior myself, so it's pretty exciting to be here.

Dr. Mayme Marshall:

Amazing. Thanks so much for being here. And Eileen, can you tell us a little bit about what you do and what got you into A Special Wish?

Eileen Lane:

Yes, of course. So, my name's Eileen Lane. I'm the Executive Director of A Special Wish. A Special Wish Foundation is a local wish granting organization. We grant wishes for children with life-threatening illnesses between birth and 21 years of age. We are funded locally here in the community and we only cover Northeast Ohio, which makes us, as we like to say, special. We also have a Sparkles of Joy program, which we work closely with the Cleveland Clinic on where we deliver meals five days a week to our families while they're inpatient in the hospital.

From our local community partners, we work with about 50 different restaurants here in the area. And then when our families are outpatient, we set them up for VIP days, like at Dave & Buster's, The Children's Museums of Cleveland and Akron, Lego Store, Build-A-Bear all places where our kids wanna be kids, but unfortunately can't go to those places during their busy hours on the weekends because they're immunocompromised. They can't be around crowds, they can't be around germs. So we try and provide those experiences to them through our Sparkles of Joy, uh, just so they can be kids and just enjoy life. So, um, that's us in a nutshell.

Dr. Mayme Marshall:

Such an incredible program that has benefited so many of our patients. Um, and I know from taking care of tons of patients in the hospital that just having a meal provided for them makes such a huge difference. So we are so grateful for our partnership with your organization and we're so happy to have you here.

Eileen Lane:

Thank you.

Dr. Mayme Marshall:

To give us all the tips and tricks of how you organize travel for these medically complex kids. So, awesome. Let's jump in.

Eileen Lane:

Love that. Yes. We're very, very grateful to be able to do that. We grant about 50 travel wishes a year, so, um, and they're all different needs and medical complexities and so many different things that, that are involved in that. So I'm excited to talk about it.

Natlie James:

Perfect. So Eileen, what are some considerations when booking vacations with a child with special circumstances? Does travel differ at all?

Eileen Lane:

Yes. So, especially with our children who are in wheelchairs, planes are not wheelchair accessible, which is crazy. We're in 2025 and my Honda Odyssey minivan, I could take a car, you know, part of my seat out and move the other seats over. And you can't do that in an airplane. So that's probably one of the trickiest things are for any of our kids that use walkers, that use wheelchairs, getting on and off the plane is a struggle. And then even being on the plane, planes only recline, we know, so much. Um, so if a child needs a full recline, if that's what's comfortable for them, it's very, very difficult for them to travel on an airplane.

We use Mobility Works. They'll rent out wheelchair accessible vans for us, for our families to travel, 'cause a lot of them with their wheelchair accessible vans, they don't wanna add the miles to it. They don't want to take-

Natlie James:

Right.

Eileen Lane:

... their vans down with them. And we totally agree with that and understand that. So for us, when we book vacations, we talk to the parents, we tell them and encourage them to talk to their specialist, their child's physician, see what their opinions are, their tips and tricks, and we really try and just meet the needs of whatever that child is.

Dr. Mayme Marshall:

What are some of your favorite locations to book? I see you wearing a Minnie Mouse T-shirt at the moment for the listeners. So I imagine Disney is a top request. What are some of the other locations or how do you make it happen with granting the wish to go to such a magical place like Disney?

Eileen Lane:

Yeah, so our most popular wish trip is Disney World. We grant about 40 to 50 trips to Disney World in a year for Wish families, um, which makes us one of the largest wish granting organizations in the area. But yes, Disney World is the number one. It's touted as the most magical place on earth. And so our families, they see that and they wanna go there. We're very lucky. We're partners with a place called Give Kids the World Village that's down in Orlando. It's a 90 acre village. You can only go if you are going through a wish granting organization.

Dr. Mayme Marshall:

Oh, that's awesome.

Eileen Lane:

They are incredible. They have everything from putt-putt to a movie theater, to swimming pool-

Dr. Mayme Marshall:

Wow.

Eileen Lane:

... horseback riding, fishing, all in the village. It also includes in the package tickets to Disney, tickets to Universal, tickets to SeaWorld. So this village is a VIP experience in and of itself.

Dr. Mayme Marshall:

Mm-hmm.

Eileen Lane:

So families think, "I wanna go to Disney World." But then when we start talking about the village, they're like, "This sounds incredible."

Dr. Mayme Marshall:

Less crowds.

Eileen Lane:

Yes.

Natlie James:

Yeah.

Eileen Lane:

Crowds, germs.

Dr. Mayme Marshall:

Take more breaks.

Eileen Lane:

They have their own roller coasters there and everything is wheelchair accessible. Um, they created a PVC wheelchair, so our Wish kids can actually go swimming, which is incredible. Um, all of the roller coasters and rides that they have there, our kids can stay in their wheelchairs and ride them. And it's honestly one of the most magical places, if not the most magical place in the entire world. Um, and it's incredible. And we have it right in Orlando, Florida. So we're very, very lucky, uh, to be able to send a lot of families down there.

Natlie James:

Didn't even know that existed. That's amazing.

Eileen Lane:

I, I educate a lot of people on that. And then they go down for their own Disney trips with their families and they volunteer. The, the village is ran with thousands and thousands of volunteers, and that's pretty incredible as well to, to know that, you know, they're putting their, their dollar towards the actual village itself and they're able to run on all these, these volunteers.

Dr. Mayme Marshall:

So then families can then give back in the future and help other kid's wish come true and-

Natlie James:

When they're able-

Dr. Mayme Marshall:

Create that same magical-

Natlie James:

Yeah.

Dr. Mayme Marshall:

... experience.

Natlie James:

That's amazing.

Dr. Mayme Marshall:

How incredible. And I'm sure they're reliving their own child's experience through the eyes of other children. So

Eileen Lane:

No, it's pretty incredible.

Dr. Mayme Marshall:

Amazing.

Eileen Lane:

They have a star tower. That's the most powerful thing you've ever seen. Every time a Wish kid goes down there, they get to create their own little mini star and it magically goes up into the star tower. And so you walk in and you see all these kids and their handwriting on all these stars, and there's-

Dr. Mayme Marshall:

Oh, my goodness.

Eileen Lane:

... thousands of 'em. So you just think of how many kids have been impacted by this place and have been able to go there. And it also provides an amazing place, we've had a lot of families that lose a child and they go back and they can see their child star there and it's very emotional and it brings back a lot of feelings for them. (Laughing). Sorry, I'm making Natalie cry (laughs) but it is, it is-

Dr. Mayme Marshall:

It is emotional.

Eileen Lane:

... a breathtaking place.

Dr. Mayme Marshall:

Yeah.

Natlie James:

Yeah.

Eileen Lane:

... to see.

Natlie James:

Yeah.

Eileen Lane:

It takes your breath away. So-

Natlie James:

Yeah.

Eileen Lane:

It, we're, yes. We're very grateful to be partnered with them.

Natlie James:

Sounds beautiful.

Dr. Mayme Marshall:

No kidding. What, so what's the road trip like from Northeast Ohio down to Orlando? Is there certain pit stops that families like to stop at or?

Eileen Lane:

We allow families to make a stop on the way down, um, when we handle all their accommodations for that. A lot of families stop in Savannah. Uh, that seems to be the most common lately. We've had some families stop in North Carolina, South Carolina. If they have family, they'll stop, so they get to see their family along the way. Um, we've also had families that are like, "We're driving all the way through."

Dr. Mayme Marshall:

Yeah.

Eileen Lane:

"Mom and dad are gonna switch."

Eileen Lane:

"We're gonna make it." And I'm like, "Okay, you really don't have to like, you can rest and enjoy the swimming pool at that hotel where you take a stop." But some, I think, are just so excited to get there that they don't even wanna make that stop. And that's fine too. Whatever works for them.

Dr. Mayme Marshall:

Are there any locations that you wouldn't recommend that have been not so good?

Eileen Lane:

So when we get wish requests for Hawaii, that's a tough one.

Dr. Mayme Marshall:

Mm-hmm.

Eileen Lane:

Um, you as a doctor probably know, putting a child on a plane for 22 hours might not be the greatest decision and cruises. Being in the middle of an ocean where you can't really seek care is not probably the, the wisest thing to do with a medically fragile child.

Now we've made special circumstances for those instances, for those wish requests and, but we work a lot with the hospital. We work a lot with the Cleveland Clinic social workers, the specialists, the physicians. We say, "Hey, we need a special letter stating that it is okay for a child to sit on an airplane for 22 hours with this medical condition." Um, we have to think about the child first and their safety. I think sometimes parents and families get so excited, "Oh, we can go to Hawaii." And they don't think about the nuances of getting there.

Dr. Mayme Marshall:

Yeah.

Eileen Lane:

So-

Dr. Mayme Marshall:

We can't apparate there, sadly.

Eileen Lane:

Yes.

Natlie James:

Yeah. And as a parent, that's completely terrifying-

Dr. Mayme Marshall:

Yeah.

Natlie James:

... to think about something happening when you're far from home. It's unimaginable.

Eileen Lane:

Yes. And a lot of parents will say, "Well, our child loves water."

Natlie James:

Mm-hmm.

Eileen Lane:

"They wanna see dolphins." Okay, we can send 'em to Orlando. There's a place called Discovery Cove. You can swim with the dolphins, you can have an all-inclusive day at that resort. It's beautiful. They have snorkeling. So we can still give you those experiences and not hopping on a plane for 20 hours.

Natlie James:

Mm-hmm.

Dr. Mayme Marshall:

In a safer manner.

Natlie James:

Safe. Yeah.

Dr. Mayme Marshall:

I know as a, a medical provider, I've definitely had patients reach out to me and request a kind of emergency plan or letter which, um, you know, talk to your medical providers because people are always happy to provide that. And I typically will just kind of outline if they have complex anatomy, sometimes we'll even include a drawing.

Eileen Lane:

Mm-hmm.

Dr. Mayme Marshall:

If they have a murmur, I like to kind of document that or what their normal oxygen saturations are, what medications they're on, just so they have a sheet ready to go in their bag that they could hand over to an emergency provider if they needed. So that's always a resource that I think most medical providers are happy to provide as well.

Eileen Lane:

For sure. And when we send families to Give Kids the World, they have a patient summary on there.

Dr. Mayme Marshall:

Mm.

Eileen Lane:

Which is one of the most important forms because it has all of that information on there. And it also lists what hospitals are in the area and what hospitals that medical provider wants their patient to go to. And I, I think that's also really important.

Dr. Mayme Marshall:

Excellent.

Natlie James:

That's so important.

Eileen Lane:

You know, you might have the closest hospital, that might be not the best option for that child's condition. So...

Dr. Mayme Marshall:

Right.

Eileen Lane:

That's our most important document, I think when we send families down there is that patient summary form.

Dr. Mayme Marshall:

That's wonderful. And I guess on this same topic, so if there is something that unfortunate happens, what services can you provide are out there? Like, I know that there's Angel Flight. Have you worked with them before?

Eileen Lane:

Thankfully, I've never had to work with Angel Flight in my 11 years of doing this.

Dr. Mayme Marshall:

Oh, good. We're all knocking on the table.

Natlie James:

(Laughs) Yes, yes.

Eileen Lane:

Thankfully I haven't. I, I do know Angel Flight's out there. Um, Wings of Mercy is another one. PALS SkyHope is, those are all ones that will help us in our area, um, in Ohio. And thankfully I've, I've never had a family have to experience that. But I also think that it goes back to us being fully open in our communication with the social workers and with the children's doctors and with... And just saying, "Hey, is this the smartest plan of action here? Is this the smartest wish for that child?" And I've had doctors say, "No, they are not okay to hop on an airplane. They need to go somewhere local."

Um, we have Salt Fork Lodge, which is local, which is a cool place. You can get a cabin. They have lots of activities so the family can still feel like they're having a trip and they're having that vacation, but they're an hour drive, hour and a half drive versus a flight. Um, so I, I think that's what's really cool about A Special Wish and the Cleveland Clinic partnership that we have is we're willing and able to have those conversations and those rough conversations about each and every child.

Natlie James:

So important for the safety of the little one.

Eileen Lane:

Mm-hmm. No, absolutely.

Natlie James:

So is there anything that you would like, recommend, anything that I can do to help plan for this vacation in regards to things that I may need to travel with? Is there any like, recommendations that you have? Like what can go on a flight, what can't go on a flight? Anything that you give your families ahead of time to say, "Hey, here's a packing list that you should consider. Or here's something else that you could consider when you're traveling with your medically complex little one."

Eileen Lane:

Yes. First and foremost, I don't want you to be nervous about if you ever travel with your children. It is okay. Um, there are a lot of resources out there that can make families feel less anxious and comfortable. The scariest thing that our families encounter is the airport. Right. Terrifying. Right?

Natlie James:

Yes. It is.

Eileen Lane:

The airport-

Natlie James:

It's terrifying.

Eileen Lane:

TSA, you're holding up the line. You, you need your kids' medications to be checked. You have a little special cooler, you're worried about that. It is okay. TSA is so prepped and amazing, especially in Cleveland. We work so closely with them and they are phenomenal. There are programs called TSA Cares. I will tell you, our TSA in Cleveland cares. We work so closely with them. When we send a family to, let's say a place like Disney World, TSA comes out to the United counter with us, with a United rep. They greet the family, they introduce themselves.

I've also prepped TSA and said, "Hey, this family, their first language is Spanish." They sent out a man that spoke-

Natlie James:

Oh, my gosh.

Eileen Lane:

... fluently in Spanish to this family. I'll never forget that moment 'cause the family's shaking. They're all nervous, they're all anxious. Majority of our families have also never traveled with their child before. And we recognize that. So we're also at the airport. I have an A Special Wish rep there. There's five people on my team at A Special Wish. One of us is there to greet the family. So they see this smiling little bright face when they roll up to the airport and TSA comes out, they greet them. They actually bring our families through their own separate TSA line. So you don't have that grumpy old man in the back like, "Oh, this lady's taking forever with their medication." Right. You know, it happens. And you don't wanna feel that extra layer of anxiousness.

TSA will also have a golf cart waiting for you on the other side if you need a golf cart to take you to your gate. I've had families say to me, "Eileen, I'm so scared when I get there. I, I don't want you to leave my side until I'm getting on the airplane." So I've worked with United, I'm like, "I need a gate pass. I need to actually walk these families through and get to their gate." And usually when I get 'em there they go, "Okay, we're fine." Like it was the whole anxiousness of going through TSA and they wanted a familiar face with them. But number one advice I have, don't be anxious, don't be worried.

I have some families who it's wild will travel with close to nothing. Like, "Oh, we'll get it all down there when we get there." And some that have packed the whole house and that is okay, whatever relieves your anxiety and your stress is fine. Nobody's judging that. Nobody cares. Everybody's just trying to get to where they're going. So I always remind families of that like, "You are not on a stage when you go to the airport. You are just Joe Schmo also trying to enjoy a vacation with your family, like the next person. So don't let that stop you from traveling with your children."

Natlie James:

It's so important to remind myself. Yes.

Eileen Lane:

Absolutely. Absolutely. And I think medications is always the scariest thing. Our families will say, "Well our medication, it comes in a bag that's over 3.4 ounces." That's okay. It's a medication. Keep it in the original packaging. Don't start switching your meds into all these little containers. Don't do that. Keep it in the original with the label on it from the pharmacy or however you got that medication.

And then I also tell a lot of our moms that, it's mostly moms, I feel like that bear the brunt of this and I'm sorry-

Natlie James:

Mm, (laughing).

Eileen Lane:

... Love you dads out there too. But mom, I feel like is always the one that-

Natlie James:

Yeah.

Eileen Lane:

... that carries that weight on her shoulders. Um, and I tell moms, I say, "Bring a note from the doctor. Bring the original prescription. Have a copy of it. So if you do get questioned, you have it." I tell, I'm telling you, you're not gonna get questioned. But I think it makes a lot of moms feel better. It's same with birth certificates. I travel with my kid's birth certificates, a copy of it. You don't need it to travel on a plane. Why do I carry it? I don't know. It just makes me feel better. Like if somebody questions, this is my child. Right? Like it just makes you feel like, "Okay, I have this sheet of paper. No one's gonna question me right now in this airport."

So, um, yes, I suggest pack the things that you need. There are resources in a lot of cities that rent out medical equipment. We work with Orlando Medical Rentals down in Orlando. That's our biggest one. And I tell families, "If there is something that you can go the travel day without and I can have waiting for you at your villa when you get there, let's create that list together." And they'll create it and I'll show 'em the website and I'm like, "See, they can get your same exact oxygen machine you need. They can get your same formula. They can, they can send diapers, wipes. I mean the world is a crazy place. You can get anything delivered nowadays. So, you know, let's have all that stuff already down there when you arrive so you're not traveling with three boxes of diapers that you don't need. You need one sleeve of them, right? To get you through that day." So, um, that's kind of the conversations that we have with families when we first start planning trips.

Natlie James:

If you think if they, if they don't travel with A Special Wish, like would you recommend just like calling TSA Cares or calling and just kind of figuring out where some of these places are to get some of these things delivered?

Eileen Lane:

A hundred percent.

Natlie James:

Okay.

Eileen Lane:

Yes. I would call TSA Cares. We encourage our families when they come home from Orlando-

Natlie James:

Mm-hmm.

Eileen Lane:

Or any city, I say, "Call this number." And I provide them with the TSA Cares number. And I tell 'em, "Call 'em at 24 hours, at least 24 hours ahead of your trip." I would call for them. They don't, they don't talk to me. They don't wanna talk to me. I have a great relationship with the people here in Cleveland so I can email them. We send them all the child's information. But when a family's in Orlando, they wanna talk to that family and they want that family to be the point of contact.

Natlie James:

That makes sense. Okay.

Eileen Lane:

Here I can be the point of contact 'cause I'm at the airport.

Natlie James:

Mm-hmm.

Eileen Lane:

I'm physically there.

Natlie James:

Mm-hmm. Yeah.

Eileen Lane:

Um, so yes, I always encourage our families pick up the phone and call them and give 'em all your information. Uh, give 'em the most random of information that... you don't even know if they need.

Natlie James:

Oh my goodness.

Eileen Lane:

But I think that it makes you feel better to know.

Natlie James:

Yes.

Eileen Lane:

Okay. They know my child's favorite color is blue. It's like they're probably not gonna do anything with that, but it's just good that they have all the information.

Natlie James:

I am that anxious person, so I appreciate you saying that.

Eileen Lane:

Yes.

Natlie James:

It's wonderful.

Eileen Lane:

Tell 'em all the medications you're bringing through, like just double check everything.

Natlie James:

Mm-hmm.

Eileen Lane:

And just make sure it's okay. I will say this too, if anyone travels after May 1st, they have to have that REAL ID.

Natlie James:

Yeah.

Eileen Lane:

Which a lot of our families haven't been thinking about. So we've had to kind of tell them, you need to go back to the DMV or go online.

Natlie James:

Yeah.

Eileen Lane:

And get that REAL ID with that extra sticker on there. Um, or else they can't travel.

Dr. Mayme Marshall:

What about meds that need to be refrigerated? How do you get those through TSA?

Eileen Lane:

They do allow soft-shell coolers to go through. So we will tell families, bring a soft-shell cooler, bring your cooler packs. Um, and like I said, they are so awesome. Like as long as you're calling them, giving them a heads-up, talking to 'em, they're pretty incredible to work with.

Dr. Mayme Marshall:

That's awesome. That's such good information.

Natlie James:

Yes, absolutely.

Eileen Lane:

We have a funny story with why we got started with TSA. I don't know if you want me to share it, but-

Dr. Mayme Marshall:

Oh please.

Natlie James:

Sure.

Eileen Lane:

We, uh, when we first started sending Wish kids down 11 years ago, we didn't know that there were programs in place with TSA at airports. And we had this little kid going to Disney World, little boy, amazing little kid. And, um, he loves Spider-Man. We work with local Spider-Man, um, princesses, you know, we have all the companies, I feel like, in our back pocket and we showed up at the airport and we had Spider-Man, there waiting for this boy to walk him, you know, up to the TSA line and this kid's face, it was amazing. I mean, he gets out of his limo and he's like, "Spider-Man is here and I'm going down to Florida and I'm gonna see him in Florida." And he's so excited-

Natlie James:

Oh, my goodness.

Eileen Lane:

And he's beaming ear to ear. We didn't think walking a masked Spider-Man through the airport was gonna be a problem.

Natlie James:

Oh. (Laughing).

Eileen Lane:

I don't know why that never crossed my mind.

Natlie James:

Oh no.

Dr. Mayme Marshall:

No.

Eileen Lane:

All I was thinking of is this little boy's face when he got out of the limo-

Natlie James:

Mm-hmm.

Eileen Lane:

That's where my mind was.

Natlie James:

Yep. Yep.

Eileen Lane:

Next thing we know, we got maybe two feet in that airport-

Eileen Lane:

... swarmed. We are swarmed from every official you can think of. "What are you doing? What's going on here?" And we explained the situation, you know, this is what's happening, this is what's going on. And the gentleman handed us his card and he said, "We have programs in place where you can do stuff like this. You have to tell us though. Like you can't just bring-

Natlie James:

Yeah.

Eileen Lane:

... Spider-Man (laughing) into the airport.

Eileen Lane:

And so that's how we got started with TSA and they've been incredible. They create gift bags for all of our kids with activities, plane activities, and they've just been phenomenal.

Natlie James:

So Cool.

Eileen Lane:

We've brought Chewbacca through the airport when we sent a girl down to Star Wars Land. Um, and that was incredible too. I felt like TSA was more involved in that than anything. So yeah, that's my fun little TSA story.

Natlie James:

I love that story.

Dr. Mayme Marshall:

It's so great.

Natlie James:

A great one.

Eileen Lane:

Thank you.

Dr. Mayme Marshall:

I can totally picture it.

Natlie James:

Right? (Laughing)

Dr. Mayme Marshall:

One of the things that I would love to hear from you, Eileen, is, and I think Natalie kind of hinted at this, but a lot of families are kind of holding on to their wish trip until their kids are a certain age.

Natlie James:

Mm-hmm. Yeah.

Dr. Mayme Marshall:

Um, so that's one of my questions is like, what's the ideal age for a wish trip?

Natlie James:

That's a great question.

Dr. Mayme Marshall:

Let's start there. (Laughing).

Natlie James:

Because yeah.

Eileen Lane:

Okay.

Natlie James:

My son's three-

Dr. Mayme Marshall:

Yeah.

Natlie James:

And, and we've been waiting, 'cause we, we just don't know when the right time will be and we want him to have a little bit of a say, you know, so what is your recommendation? That's good question.

Eileen Lane:

I, I totally get that. Um, honestly, you can't go wrong with any age. And I know you don't wanna hear that as an answer, but you can't. I think that there are some families that wanna take their kid on that trip when they're 2, 3 years old. That's fine. And there are some that are like, "Hey, we wanna wait till they're 5, 6, 7." That's okay too. I think that it's up to the parents and their comfortability level as well, because a parent going on the trip super stressed, super anxious, might not be the greatest trip for that child, right?

Natlie James:

Mm-hmm.

Eileen Lane:

So, if you need to live in the, um, you need to live in the, "Okay, my child has this diagnosis and I need to just sit here for a moment." That's cool. Some families, their child get that diagnosis and they're like, "We need to hop on a plane tomorrow." That's fine too. Like, I, we're fine with either way. I do think the kids that experience, the kids that experience the coolest trips are 5, 6, 7, 8 years old. I think somewhere in that age range is pretty awesome.

Natlie James:

That's what I wanted to hear. I like that. Very nice.

Dr. Mayme Marshall:

It'll be here before you know it.

Natlie James:

Yeah. Oh, it will. Oh, I know. It's right around the corner.

Dr. Mayme Marshall:

My second part of my question was, if you have any advice for the families that are not traveling but would love to travel and maybe they're not going on an extravagant wish trip, but they just wanna get away for a weekend. Like what, what kind of advice would you have to those families?

Eileen Lane:

Yeah, absolutely. I mentioned Salt Fork Lodge. I think that's really great.

Dr. Mayme Marshall:

Yeah.

Eileen Lane:

Um, we have Cedar Point right in our backyard, so if the child's older, we have done some really cool things with Cedar Point where we have turned kids into ride engineers for the day. Um, we have a whole, When I Grow Up program, that's a really cool local program where we turn that child into what they wanna be when they grow up. Anything from police officers to firemen to ride engineers at Cedar Point. I think those are really cool and unique experiences that the families can have that kind of just give them a break for a minute. Cedar Point's, an hour and a half, you can go, the Breakers is beautiful, that hotel, it's right on the beach, it's right on the water. So we have options and we have a cool amount of options, I think, here in Ohio. So I tell families, I, I encourage that.

We have a lot of families that maybe if they can't go somewhere, they want a celebration, they want a giant bash.

Dr. Mayme Marshall:

Mm-hmm.

Eileen Lane:

Fine by me too. Let's celebrate, let's celebrate your child, let's celebrate what your family is going through or has gone through. Those are always a ton of fun. Like we have a blast with those celebrations. So there are options that we can do here locally and we get very creative. We get wild with some of these things (laughing).

So I mean, we turned a girl into an FBI agent for the day. It was amazing.

Dr. Mayme Marshall:

(Laughing). Oh, my goodness.

Eileen Lane:

I mean, we worked with Fox 8, we've worked with-

Dr. Mayme Marshall:

That sounds so fun.

Natlie James:

Yes.

Eileen Lane:

... so many different community partners that go above and beyond and it's very rare for us to hear, no in Northeast Ohio. I present one small snippet of a story of a child and what they're going through and it's, "Yes, Eileen, what do you need?"

Dr. Mayme Marshall:

Yeah. "How can we help?"

Eileen Lane:

"How can we help? What do you need me to do? I'll do it right now." And that's incredible. And we lean on that. We take advantage of that wholeheartedly. We know that we have such amazing partners here in our own community and we're gonna utilize them. We have a lot of fun.

Dr. Mayme Marshall:

That's a great, I guess, segue to how can we support A Special Wish? So, I'm sure listeners are inspired by all these incredible stories and would like to know how they can support your organization. Do you have socials that we can follow along and see these great excursions?

Eileen Lane:

Of course.

Dr. Mayme Marshall:

Tell us. What can we do?

Eileen Lane:

Yes. Yes.

Dr. Mayme Marshall:

What do we need to know?

Eileen Lane:

So our website is aspecialwishneo.org. You can log on there and volunteer if you wanna help, you can donate. We do have all our social medias, A Special Wish NEO, as well. NEO standing for Northeast Ohio. Um, so yeah, go on, follow us, see the cool things that we're doing and yeah, like share, do all that. Just support, I think, is the biggest thing. If, you know, you have a community business and you wanna get involved, we're always looking to partner with more and more businesses in the area. So please contact us. We're willing and able and excited. So...

Dr. Mayme Marshall:

Wonderful. Natalie, do you have any other questions or anything else that can make-

Natlie James:

No.

Dr. Mayme Marshall:

... you more confident I to take your kiddos on their trip?

Natlie James:

I, I just wanna say thank you for being here. I've learned so, so much from you. Um, it's, it's been wonderful. Thank you.

Eileen Lane:

Thank you. Thank you. Thank you for having me.

Dr. Mayme Marshall:

And Natalie, can you tell us a little bit more about how to get involved with Healthcare Partners?

Natlie James:

Absolutely. So, there is an email address that you can contact if you would like to get involved with Healthcare Partners. We're always looking for passionate parents and, and people that will help us advocate for our patients. Uh, childrenshealthcarepartners@ccf.org. So that's childrens, with an S, healthcarepartners@ccf.org. And if you contact there, they will guide you through the process to become a healthcare partner. It's very quick and simple. Uh, you go through an online portal and you get certified as a volunteer for the Cleveland Clinic. And then once you're certified as a volunteer, you can meet with us once a month and give any ideas that you have or anything that you can think of that will help make our patients and, and parents, you know, happier and healthier.

Dr. Mayme Marshall:

Well said. Well, thank you both so much for being here. We hope we've provided you with helpful strategies to ensure your child's comfort and safety during travel planning trips with a little one who needs extra help can be difficult at times, but the memories you create will be worth it. If you'd like to schedule an appointment with a Cleveland Clinic Children's pediatric cardiologist, please call (216) 445-5000.

Speaker 4:

Thanks for listening to Little Health. We hope you enjoyed this episode. To keep the little health tips coming, subscribe wherever you get your podcasts. Or visit clevelandclinicchildrens.org/littlehealth.