SE 2: Episode 4: A Kid Again

Raylene Lewis: 0:02

Hi there, and thank you for joining us on AVM Alliance, a pediatric podcast for families and friends whose lives have been affected by traumatic brain injury, rare disease, brain disorders, or stroke. The purpose of this podcast is to focus on the kids side of brain injury with honest talk, news, information, and discussion for our community. Being a parent of a medically complex child is an extremely difficult path to suddenly find yourself on. I'm Raylene Lewis, and my son Kyler suffered a hemorrhagic stroke at age 15. Thank you for joining us. A happy new year to all our listeners. As we begin 2024, we are overwhelmed with gratitude for each and every one of you who have been a part of our AVM Alliance family this past year. Your support, generosity, and kindness have helped us create a pediatric AVM aneurysm and stroke community. Here for each other. Thank you so much for your incredible support. And here's to a year filled with even more relationships and victories in 2024 stroke has no age limit. And if you would like more information on brain AVMs, AVM Alliance, an official 501c3 nonprofit, now has its own website, www. avmalliance. org, and on it you will find lots of information as well as personal stories. Also, we wanted to let our listeners know that there are several studies looking for participants right now. For children who had a stroke when they were born, there is the I Acquire, used to treat 8 to 36 month old children. For children who had a stroke when they were 1 month old or older, there is the T O P P S, transcranial direct current stimulation option. It uses a form of stimulation in conjunction with conventional occupational therapy for arm weakness. And, finally, there is a vein of Galen Malformation Genetics Research Study. Parents whose child has received a VOGM diagnosis and wish to participate are provided a special Q tip. to swab their cheek and the cheek of their child. If you would like more information on any of these studies, you can find it on the AVM Alliance website under Research Studies or email us info at avmalliance. org. And we will be happy to send you more information. And for our international listeners with a VOGM diagnosis. Yes, you are also eligible and encouraged to participate in this study. Today, I'm excited to introduce our listeners to Amy Waggoner, who has graciously come on to tell us the story of her medically complex child, Luke, and Kathy Derr. Founder and director of family engagement for the absolutely fabulous organization. Everyone should know about a kid again created to provide kids with life threatening conditions and their entire family with Opportunities to forget about the stress that comes with having a child with a medical condition A KID, again, is a national organization that provides year round activities, all completely planned and cost free. They serve parents and siblings just as much as the enrolled child, and they offer group activities so that families can connect and form relationships and support one another. Kathy and Amy, thank you so much for joining us. Thanks for having us. Yes, thank you. I just wanted to get started. Amy, why don't you tell us a little bit about your story about Luke's diagnosis and a bit about what your journey has been so far?

Ami Waggoner: 3:48

Okay so basically Luke is 16 now. He was diagnosed with generalized idiopathic epilepsy at the age of 5. So when Luke got that diagnosis, up until that point, we have lived a pretty normal life is what I would call it. On the go all the time. My husband and I both work full time jobs. I actually just kind of thought, hey, he'll take a man. And as long as he's kind of compliant with that medication, he will be, you know, his seizures will be controlled and we'll go on our merry way. But, that has not been our journey at all. Luke's epilepsy from a very young age from that diagnosis. He was very difficult to treat. That first year was just basically I think back on it. It was like a nightmare. The anxiety that just when is the next seizure happening, which was daily, nightly changing medications in the hospital, out of the hospital and So about a year into it, I was just kind of at my wits end. My family was stressed out. You know, I was kind of private about the whole thing and just So we didn't have that really community or support system and that Luke was in the hospital and the doctors called us into the consult room and they're like, listen, he has gotten severely worse. His seizure activity and, you know, his looks terrible, but they said, look at this though. They put that he was on the camera, the video and they said, but look, he's having a big seizure right now. And look at him. He's talking. He's putting together a Lego. He somehow is adapting to all these seizures. So that was just a blessing right there. And I just thought to myself, I have to change my outlook to help everybody around me. The way we're living and we've lived this last year. is we can't do this any longer. So we are going to find joy in every minute of everything we do from now on. We are not going to let this epilepsy diagnosis stop us. We are going to live for the moment. We're not going to dwell on yesterday or think about tomorrow. We are going to dwell on the times that we have with Luke where he's seizure free. I got involved in his treating hospital. We started doing some volunteer work. So I kind of found my community at the age of 12. He was diagnosed with Lennox Gastaut syndrome, LGS. And LGS is a severe form of epilepsy where you have many different seizure types that are very difficult to control. So he's 16 now. Cognitively he acts like he's about seven. He lost a lot of years. We were talking about a corpus callosotomy where they divide the brain to stop those seizures and actually I had done a lot of research on the deep brain stimulator and they were putting these in patients 18 and older at the time for generalized epilepsy. And Luke was actually the first or second in the U. S. a pediatric patient to get a deep brain stimulator for generalized epilepsy. It's been a little about two and a half years. It has been amazing. It has decreased his seizures by over 50%. Just letting Luke live his best life after everything he's been through. All these years just, you know, means the world to us. So, so when we can get involved with, you know, with different organizations, like a kid again, and we can do some fun things for him, it just, it makes all the difference in the world.

Raylene Lewis: 7:11

I'm so glad that the most recent procedure that you tried worked, you know, Kyler, my son has epilepsy, which we knew that he was going to have. We chose to treat his medical condition, which is brain AVM. And he was having seizures for a while. And they said the words intractable epilepsy, the doctor was like, I'm going to try this one thing, but if it doesn't work, you know, and knock on wood, he's been seizure free now for a little over three months, but it's, it's, it's such a roller coaster, you know, up and down. So tell me, how did you get involved with a kid again? So

Ami Waggoner: 7:48

basically I just. I mean, I'm on a lot of Facebook with different organizations and everything. And it was actually a LGS, Lennox Gusteau Syndrome page, Facebook page. I really read through it and I was like, Oh my goodness, I think this would be, you know, a great organization. I loved everything they stood for and how they involved the family. Went on the website and signed up and it's very easy to sign up. And so that's, that's always a plus to a mom of a complex child. How easy is this going to be to do? Because it's like, we don't have a lot of time. So. Yeah, that's how we kind of got involved.

Raylene Lewis: 8:20

That's wonderful. I think a lot of People don't understand what it's like to live with a medically complex kiddo, you know, and I think every time I hear the doctors tell me, well, your kid is medically complex. I just want to roll my eyes and be like, think, I don't know. So Kathy, tell me a kid again, seems like a fantastic organization. Can you tell me a little bit about how you got started?

Kathy Durr: 8:43

I'd love to. Sure. We've been around since 1995. And. I helped start the organization because our oldest son, Christopher had an inoperable brain tumor on the brainstem. And while we were going through what you guys are going through, realized how blessed we were to be surrounded by so much love and support, Christopher passed away, unfortunately, from having gone through. The experience I realized I needed to do something to help other families started again and off we went. We started here in Columbus, Ohio with our first adventure and for those that don't know adventures is what we call our advent. Events that we do for the families and an adventure is a cost free care, free fun experience for the entire immediate family to come to. So siblings are included in everything that we do because we recognize the sacrifices that they are making when a child is diagnosed with a life threatening condition. So they are included in everything we do and treated. Equally to the diagnosed child. So we try to think of everything so that when you come to an adventure, you don't have to think of anything. It's a, a fun filled day with your family, as well as with other families. You become a support system for one another. And a couple of years ago, we decided to take this organization nationally. And so we started in Texas, as well as a few other areas and a very excited about. How we

Raylene Lewis: 10:10

are growing. It's so exciting and I think it's, it's very needed. My daughter Rylan is a senior in high school this year and she is going through the college essays. And of course, a lot of her essays are based on growing up with a brother with a life threatening medical condition. And I just absolutely love that a kid, again, brings in that sibling aspect and kind of is like a whole family. experience together. So who is eligible to enroll? You said it was up to age 20, right? Yes, up to age

Kathy Durr: 10:45

20. The application is on our website. Any family that has a child with a life threatening condition. So there's a wide variety of not so fun diagnoses out there. We ask on the application what the diagnosis is. And a lot of them are auto qualified. If we have any questions as to whether it is life threatening or not, we will contact the family. And we have a medical committee also that reviews some of those applications.

Raylene Lewis: 11:11

And I will have the website on this podcast under the comments, but can you just go ahead and tell it for me real quick for our listeners? Sure, it's at kidagain. org. And there is something about adventure. For Kyler's Make A Wish, I mean, we said, What do you want? And he said, you know, All I really want is an adventure. And I think that's because they get stuck in their room, in their bed. So I think adventure and doing something fun just makes a big, big difference. And we try to Have in our house. Okay, if we have to go and have this treatment or have this procedure or have this done It's kind of like we got something that sucks And so we try to do something that really doesn't suck that they can look forward to but a lot of times for medical Families that's hard because all of our times go to the go to the medical or the parking garage You know every time we go I know Kathy that you must rely a lot on community support How can people get involved with a kid again? Oh,

Kathy Durr: 12:09

we absolutely do. We would not exist without the support we get from volunteers. I always say they're the backbone of our organization, would love to have more volunteers. We would not exist without some very kind hearted people and always need more because the amount of families we are serving is growing so fast. And you know, if anybody out there is, is a owns a business or something that might be a nice place to have an adventure, would love to hear from them as well. And all of that can be done on our

Raylene Lewis: 12:44

website. Fabulous. And I, yeah, I just want to stress again, even the smallest adventure can make the biggest difference. Anything I think is a huge adventure for, for some kids, especially when they, they. Get left out of so many regular activities. And I think it's hard for parents to see kids, you know, they see their, you know, friends or the kids who are their age going and doing these things that they know will never be an option. And that's just another reason why a kid again is so amazing because it gives them experiences that they would not otherwise have. We're on all

Kathy Durr: 13:18

the handles where Facebook. huge on Facebook. We even have private Facebook groups for our family so they can talk to one another and exchange ideas and everything on there.

Raylene Lewis: 13:29

The community aspect, which Amy talked about a little bit as well, is a big thing, especially with AVM Alliance. That's something that we do too for our aneurysm, AVM, and stroke community, you know, hemorrhagic and ischemic. And it's. easy sometimes when you're down in the thick of it to forget that you're not the only one going through what you're going through. And it's so easy to get lost. And so to have a connection of other people, even if it's not the same medical condition, you can learn from each other. You can gain strength from each other advice, you know, never underestimate the power of community just for mental health. just

Ami Waggoner: 14:11

that sense of community. You know, it's so important for me and our family. But when I look at Luke and he's looking around at other kids and seeing their, you know, the challenges they have and everything, I just think it helps so, so much. So it's been amazing for us. And yeah, we're just, we just really, really blessed to be a part of this.

Raylene Lewis: 14:31

Well, Amy and Kathy, Kathy, I agree wholeheartedly. Thank you so much for all you do for our kids because it does mean the world and it makes the biggest difference ever. And these memories, each one is like more precious than gold. I'm just being completely honest about it. Right now, AVM Alliance is working to send out stuffies, stuffed animals. And so you know, this last week we sent out 115 stuffies and the parents have sent us. back, you know, pictures of the kids, you know, opening them up and I'm so happy. And I get messages about stuff. He's going to therapy and stuffies, you know, snuggling while they have to take their shot. I hope that our listening community knows what a difference it makes, like even the littlest thing, because I think that people who don't have medically challenged kids don't understand the power of a Lego or the power of a stuffy or the power of a card. I mean, it really can just be. Anything, but it can take a kid from like the lowest low to, you know, back to normal level of, you know, I'm cared about, especially because, you know, mom and dad say that they care. Right. But that doesn't count. And it's like, I don't know why it doesn't count, but I'm just telling you as a kid, mom and dad caring doesn't matter, but having, having the, having somebody else. That thought of you, even if it's somebody that you don't even know is like, wow, that means I, I actually really may be special. You know, you, you actually do want me to get better. And that motivation for improvement and recovery and therapy, it just makes all the difference. So thank you guys. Thank you so much for joining us today.

Ami Waggoner: 16:11

Thank you so much for having us.

Raylene Lewis: 16:14

The focus of this month's Things to Think About is based on the children's book, Or So They Thought, written by pediatric hemorrhagic stroke survivor Marina Ganetsky. When a child suffers a stroke, their life changes in an instant. They not only have to relearn how to make their bodies work, they often lose their pre stroke friends. Having to lose your body working like it always had is hard. But losing your support network of friends? Especially when a child is going through something that changes their life dramatically. is even harder. Marina's inspiring book illustrates the struggle, hope, and extraordinary resilience of children who have suffered a stroke. She reminds us what it is like for a child who has suffered a life altering medical illness, and her book reminds children to show love for their friends, stressing the need for inclusivity. We all need each other. Thank you, Marina, for reminding us of this valuable life lesson. And as always, if you have questions, have a topic you would like to hear about, don't be shy. Share it in the comments and let us know. And if you liked what you heard today, please go online and rate this podcast. Remember, you're never walking this journey alone. Take care, y'all.