Partner Organization, Love From Liam Foundation With Ashlyn Dugan

Distance can be a major barrier to accessing quality healthcare in a timely manner. For patients, access to air transportation can make all the difference in getting the treatment they need. However, flights can be expensive, and putting off medical care because of costs can put you or your loved ones at risk. That's where Angel Flight East comes in.

Welcome to Take Off Talk with Angel Flight East, a nonprofit dedicated to facilitating free air transportation for children and adults with medical conditions who need treatment far from home. Our organization covers a 14 state footprint from Virginia to Ohio to Maine and for further distances, we partner with other public benefit flying organizations. No matter how many times you need to get to your medical treatment or see a loved one in need, we are here to help. Unfortunately, few people know about free services like ours, and thus cannot use them when needed. We don't know how many people forgo medical care because they don't have accessible transportation, and that's what this podcast is here to change.

Partner Organization, Love From Liam Foundation With Ashlyn Dugan

byMaddy

Take Off Talk with Angel Flight East | Ashlyn Dugan | Love From Liam Foundation

In this heartwarming episode, hosts Jess Ames and Maddy Beck welcome Ashlyn Dugan, the founder of Love from Liam Foundation—the partner organization of Angel Flight East. Ashlyn shares her inspiring journey of creating the foundation when her son Liam was born with spina bifida. The conversation touches on the challenges these families face, the importance of community support, and Love from Liam's impactful events. As Ashlyn opens up about her daily life, running a coffee shop, and juggling motherhood, we get a glimpse into the strength and passion that drives her commitment to making a difference. Hear Ashlyn’s powerful message of hope and encouragement for families facing similar struggles, emphasizing the importance of embracing the light at the end of the tunnel.

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Partner Organization, Love From Liam Foundation With Ashlyn Dugan

We have our partner organization, Love from Liam's founder, Ashlyn.

Thanks for having me.

Love From Liam Foundation

Thanks for joining us. Do you want to give a little bit of a background of Love from Liam?

I started Love from Liam when my son was three months old. He was born with Spina Bifida and we started a foundation for him to spread the love from his Spina Bifida. We found out when I was 20 weeks pregnant that he had Spina Bifida and the doctors back here told us that we should terminate him.

We then somehow ended up at CHOP to get a second opinion. The doctors came out and said that Liam would do perfectly, and he did. He laughs, he runs, he talks, he loves animals, he plays basketball. Our foundation mainly when Liam started walking, got a walker and when we went to go get it, they asked us to bring that walker back to the Spina Bifida Clinic at CHOP. We thought that we could help families not be able to give their equipment back and help them start buying. We realize that insurance doesn't cover things. That's a little bit about my Foundation.

I found Love from Liam like I found a lot of things in my life on the internet. I reached out to Ashlyn and said that we would love to partner with your organization because our missions are pretty much aligned very well. We always like to let other organizations know that we provide flights for patients who need medical treatment far from home. If any of the families that she is currently assisting needed a flight to CHOP or wherever else they needed to go, we could help them that way.

We love the partnership. I think we've had two families fly with you guys. I feel like sometimes it's hard because some of the families are farther away, but we love the partnership with you guys. We love that. We can have that as an addition to our medical commitment for families, so it's super cool.

I get to hang out with you guys.

Hollywood Fundraising Event

That’s our favorite part. I was going to talk about one of our hangouts at your Hollywood event. Do you want to tell our audience about your partnership with CHOP and the event that you guys hosted?

I am the Vice President of the Advisory Board for the clinic. It's a bunch of moms and they’ve come together and we have a parent advisory board and we help the clinic and fundraise for the clinic. A lot of people think that CHOP is not a nonprofit and it actually is. It's hard to get funding and stuff like that. Each department has to fundraise, so we did that for the clinic. Since everything was COVID, CHOP was not allowing us to have the event.

That's when I reach out to you guys. I was like, “I have the perfect spot,” because when I came to the gala that you guys had, I was like, “This would be so perfect.” It's a central location. It was a Hollywood theme, like a red carpet theme. Shining star theme for the kids that have Spina Bifida. When they came in, they got a name tag and a VIP pass. They felt like they were VIPs and we raised money for the clinic. I think all is said and done, we raised 8,000 for the clinic. It's super awesome that we were able to do that. Super fun and we had an awesome time. I think we had maybe 300 people there. I can't remember.

I remember because we pitched it to the airport and I was like, “It's for a partner organization. This is what they do.” I remember they came back and said, “For how many people?” I was like, “I don't know maybe 100 to 150. Before, Maddy and I had to break the news and be like, “This is over 300, but we'll be fine.” It worked out. It was super awesome. Everybody had a great time. The kids had a great time. It was a perfect spot for it.

Those kids are so stinking cute. There was a DJ and there were games. They had the best time.

They did and it was cool to watch them when they came through the door. They walked down the red carpet. They thought that they were stars. They felt like they were on the red carpet which is cool because some of these kids need that. They don't have that and it was cool for the parents too. It not necessarily was just for the kids. It was also for the parents to network with other families that they are going through what we all go through.

It's nice that we all knew what we were all going through and we were all able to connect in different ways. It's cool. It's the 60th celebration of the Spina Bifida Clinic. We're putting on a gala and silent auction for the clinic to celebrate 60 years. That's another event that we have coming up with the clinic. We're super excited about that.

When is that?

October is Spina Bifida Awareness Month. We try to do our things in October. It's on the last Saturday in October.

I didn't tell you yet, but I signed us up to attend. Sorry to tell you but you're already going.

A Day-To-Day Life With Spina Bifida

Can you tell the audience a little bit about what it means to have Spina Bifida? What is the normal day-to-day life of a patient with it?

Spina Bifida is a birth defect where the baby's spinal cord doesn't develop properly. Essentially when Liam was in my belly, it formed a sack-like cyst on his back and his spine grew in that cyst. What the doctors had to do, which is crazy, they had to remove that cyst and then put his spine back where it was supposed to go.

He was two days old when they did that but where that cyst was damaged the nerves to his bowel bladder and ankle support. For all kids, that cyst-like sack can be anywhere on the spine. That's essentially what Spina Bifida is. Liam's was lower. If it's lower on the spine, it's essentially a little better for the kid. If it's higher, then they might have more problems with mobility, but Liam's trouble with his bowel bladder and his ankle support. He has weak ankles so he wears braces.

Somebody like me going through a daily life with Liam, sometimes, it's hard of what the unknown and what ifs. Especially, parents going through appointments like our next appointment. What if he needs another surgery or what is going to happen at this next appointment? That's hard to go through and school. It is a big thing.

When your kid is at a certain age they get to go to school, it's not like a normal kid going to school, Liam has to have a nurse to go with him. If he does not have a nurse, he can't go to school. That's a real battle that some parents and everybody go through and struggle with. This upcoming Monday, Liam doesn't have a nurse so he can't go to school. It's hard because Liam loves school.

I think the battles of the unknowns like, “Is he going to need more surgeries? Is he ever going to be potty trained? Is he ever going to be able to go to school without a nurse?” That's our daily struggle. It's Liam's normal. He knows he wears braces. He thinks that it's normal for him. It doesn't affect him at all and he just goes with the flow and he's the happiest little boy.

Looking at him, he looks like a normal kid besides wearing his braces, but he gets around like any other normal kid. He's always happy. I'm looking at him from the outside. You're like, “He’s a perfect kid.”

He is. He's a bundle of joy. He started playing basketball and when we went to his first basketball, he was so excited to dribble the basketball and shoot the basketball. When they started exercising, he came over to us at the bleachers. He's like, “I'm not exercising.” “Liam you have to do the exercises to play basketball.” He said, “I came here to play basketball. I didn't come here to exercise.” I was like, “Fair enough.”

Liam is my spirit animal.

He sat on the bleachers the whole time until they started playing basketball and I was like, “How do you argue with that?” “You don't want to exercise. You just want to play basketball. Cool, okay.”

Supporting The Foundation

How can our audience support what your organization does, whether it's by awareness, donations, or anything of that sort?

We have a Facebook page, Love from Liam Foundation. We have a website LoveFromLiamFoundation.org. We post on Facebook and Instagram and update everybody but they can donate through our link on our website. We have a big event coming up which is Laps for Liam in August. It's like a Relief for Life. These kids form a team for them. Liam's is Liam's Line crew and then they come up with random team names. Whoever sells the most T-shirts, we give a price too. Last year, we gave a cruise away to a family. It’s super awesome that we were able to do that.

This year, we're doing it at the Altoona Curve here in my hometown. It's our baseball team and we do laps around the curve. We used to do it at a track, but now we try to find different places and we have basket raffles, DJs, and fun things for the kids to do. It's a cool event. Last year, we raised $30,000. It's our biggest event that we do and it's cool that we have almost 20 families making 20 teams and coming together.

It's all about being there for the kids and helping our foundation. All the money we raise goes back to our foundation to help us buy medical equipment. It also goes to the Spina Bifida Clinic to help them buy equipment as well because they need walkers, crutches, wheelchairs, and snacks for the clinic. We help out with that.

All the money that we raise goes back to our foundation and the clinic to help buy medical equipment.

Getting To Know Ashlyn

What do you do when you're not running Love from Liam?

Everything else. I am a wife. Me and my husband has been married for six years now. I’m a wife and I'm a mom of two. I have Liam and then I also have one-year-old, Lawson. I own a cute little coffee shop and Duncanville Pennsylvania called Coffee on 3rd. I do that, then I do the foundation, and then I do the Parent Advisory Board, so it's fun. I love it.

Ashlyn, you are the first mom that Jess and I met and we're like, “Moms do have superpowers.” Anytime I'm around you I'm like, “I cannot say I'm tired because this person is doing a bajillion things and two little ones.” Maddy and I are tired of just coming to work for two hours.

Ashlyn is like a poster child of like, “This is easy.” Jess and I are the poster child of the little eye masks that you can get at Target. We're like, “You can have masks.”

I don't know. I think it comes from passion. I have a passion for my community. That's where my coffee shop came about and then my passion for helping kids like Liam. I feel once you guys get passion for something, you will be the same as me. What do you guys do? I feel like you guys have such a good passion for Angel Flight that you guys do an awesome job. I feel like that is your passion.

It's something.

I wanted to secretly know how long the pause or silence would go on for. I thought about it, but I was like no I want the audience to not sit there and double look at their phone being like, “Are they still there?” “Oh no, my internet went out. I missed the podcast.” I'm just kidding. Jess and I do love exactly that. We do love what we do and we do love your organization. We would not be here If not. I don't think anybody would work for a nonprofit for fun.

That shows how much you guys care about the patients and everybody that comes to Angel Flight East and I've been to your gala. It was awesome, it was so fun and I think I was in one of Wings N’ Wheels. It was awesome too. It shows that you guys have passion for what you do and that's the whole key. You want to make sure that you love what you do and have passion for work.

You want to make sure that you love what you do and have passion for work.

I used to work for other people and did a different job and I literally hated it. Maybe if you saw previous Ashlyn, you’ll be like, “Okay, it's possible. It all makes sense now.” I guess being a mom and a wife, I don't have an option. I cannot be tired. That is no option and that's why I opened up a coffee shop so I have caffeine to keep me going.

Light At The End Of The Tunnel

That's a great reason. What is one final thought you would want to leave our audience with?

One final thought is no matter what you're going through as a family if your kid does have a disability, there's always a light at the end of the tunnel. No matter if you're struggling with you're diagnosis, surgeries, and whatever you guys are going through. I always tell people to get a second opinion no matter what, because imagine if we would have terminated Liam at that first doctor's appointment. Imagine if we wouldn't have got a second opinion. He wouldn't be here and we wouldn't be doing the Love from Liam Foundation. I always express that there's always hope at the end of the tunnel. God is always with you and He will get you through anything. These kids bring such a light to the world.

Liam is such a miracle and we are thankful for him every day. He has taught us so many life lessons and that's pretty much it. I want to say that last year, 68% of women terminated when they heard the diagnosis of Spinal Bifida, you don't have to. Look at somebody like Liam, playing basketball and playing with his animals and loving life, and even all the families that were at the CHOP family fun day, look at all of them. Mostly all of them got the option of termination as well. It's hard to hear that but also get a second opinion and keep pushing through because we will always get through.

That's such a staggering number to think about, 68%. That's crazy.

It hurts my heart because it's crazy to me. There's like Liam, I knew God put him in our life for a reason. I knew we were meant to go through their struggles and I knew I wasn't meant to go through all that but 68% last year and it's so sad because that's not the only option. Go get a second opinion and learn that your kid will be perfect just like Liam.

Yes, Liam Jr.

That's right, have a Liam Junior.

Thanks so much, Ashlyn. We can’t wait to see you in October.

Hopefully sooner.

Thank you.