The Kailee Mills Foundation

Raylene Lewis: 0:02

Hi there, and thank you for joining us on AVM Alliance, a pediatric stroke podcast for families and friends whose lives have been affected by traumatic brain injury, brain vessel disease, or stroke. The purpose of this podcast is to focus on the kid's 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. In brain news researchers have recently performed a successful surgery to repair a vein of Galen malformation in a baby's brain before birth. A vein of Galen malformation, also called vogm, is most often first diagnosed from a prenatal ultrasound, and later confirmed with an MRI during the third trimester of pregnancy. A vein of Galen malformation is a condition in which arteries bringing high flow, high pressure blood to the brain from the heart, connect directly with one of the main collecting veins deep at the base of the brain rather than to capillaries which slow blood flow and deliver oxygen to surrounding brain tissue. Due to the changes a baby goes through during and after the birth process, the high flow in the malformation has a more serious effect on the heart and brain after birth, which puts a lot of pressure on a newborn's heart and lungs. This can cause permanent damage. The researchers were able to successfully perform an embolization in utero. After birth, the newborn had a normal neurological exam and showed no stroke, fluid buildup or hemorrhage on a brain mri. This baby was the first treated patient in a clinical trial that is currently underway at Boston Children's Hospital and Brigham and Women's Hospital. It is estimated that VOGM, the most common congenital vascular brain malformation, occurs in as many as one in every 60,000 births. A link to this study is in the description of this podcast, The AVM Alliance podcast brings all types of guests to tell their story. This month I had the pleasure of visiting with Brianna McCullough, who runs the Kailee Mills Foundation. This foundation is so very important because their mission to save lives one seatbelt click at a time, truly applies to us all. I am so excited to have you today on our podcast. Thank you for joining us. Thank you for having me. Absolutely. You know, we are a stroke podcast typically, but we're also involved with traumatic brain injury and reaching out and dealing with those parents as well. And gosh, I just think everybody should listen to your story because the foundation that you have put together is something that everybody can relate to.

Brianna McCulloch: 3:00

Yes, thank you. So Kailee is actually my niece. And five years ago she, it was October, 2017 and she was riding in the car with three of her friends. She was in the backseat and she, they actually all had their seat belts on, but she took her seatbelt off just for a moment to slide over and take a selfie with her friend in the backseat. They were in their Halloween costumes. And in that split second, the driver ran off the road. He took a curve too quick, and the car flipped front to back. Because Kailee was not wearing her seatbelt. She was ejected and killed, and her three friends in the vehicle all walked away with some scratches and bruises and really weren't injured. And so we knew that had she had her seatbelt on in that moment, she would have survived that crash. So, you know, because of that split second decision, She lost her life at 16 and what ended up killing her was as she was ejected from the vehicle, from hitting her head on the glass on the way out she did get a traumatic brain injury and they ultimately determined that that is what killed her. And through the work that the Kailee Mills Foundation has been doing over the last five years, we have encountered so many families that have. Experience the same thing. Either fatality from traumatic brain injury or serious traumatic brain injuries that they have been hospitalized for extended period of time. And have recovered, but still have a long, long road of recovery ahead of them. And so we have a family assistance program where we assist families, whether it's fatality or injury, but it's something that we see over and over and you know, you only get one brain. So it's in our world with vehicle crashes is just trying to get people to understand that the preventative measure of a seatbelt can save you from the damage to your brain.

Raylene Lewis: 4:59

Absolutely. And I just have to say, I am so impressed with your foundation and everything that you're doing. I mean, seatbelt safety is just something we should all think about. Sometimes as caregivers, we're just trying to survive in seatbelt safety. I'm like, I'm hurrying. I'm trying to get to the therapist, or I'm trying to make sure that we're taking care of things and I need to look and say, Hey, you know, is the person that I'm taking care of, do they have their seatbelt? Do I have my seatbelt on? Because like you said, your niece. She was very close to home when this happened, right? Yes. And it just shows that an accident can, can happen anywhere at any time. You do a lot of education as well for schools. Can you talk to me a little bit about what you offer?

Brianna McCulloch: 5:40

Yes. So within days after the crash Kailee's dad was driving by the cross. As you said, it was 500 yards from her home, right outside of the neighborhood. On a 30 mile an hour side road at, you know, a place where most people would say, oh, I'll be fine without my seatbelt. And that's not the case. So they drive by it every day. And as he was driving by the cross, there was about 200 kids that were just. Surrounding the cross, sitting there praying grieving the loss of their friend. And he said, you know, I really need to stop and talk to these kids. And, and I mean, think about that. This is two days after he just lost his daughter. And so he stopped and he started talking to them about how important it's to wear your seatbelt, how important it's to protect yourself. Life can change in an instant. And the kids really, really took to the message. And so he said, you know what? We need to talk to kids about this because they're. Too many kids are dying from this. And so we started up our school programs where we just went and started doing safety talks to these kids, showing them videos of Kaylee, talking to them about, you know, something they can relate to. They look at Kailee and they see themselves in her photo and her videos, and so that really started to go overwhelm. We created the Seatbelt Awareness ribbon and we started spreading that throughout the community, and the community wanted more and more of it. And so Texas Department of Transportation Clicker Ticket Campaign actually heard about what we were doing through all of this, and they asked us to come and be the spokesperson for the campaign for the state. So we were the spokesperson for that campaign for two years in a row and traveled the state with them. And everything just kind of really, really took off from there. So we have been doing school programs and community events for five years, and then we also have our family assistance program where we're walking through this journey of grief and loss with other families who are experiencing the same thing. And then we do college scholarships as well.

Raylene Lewis: 7:39

Wow, that's amazing. And you put together grief packages and care packages. Can you talk to me a little bit about that as well as like how you go through and you, you offer paying for funeral expenses in some cases. Can you talk a little bit more about that?

Brianna McCulloch: 7:55

Yeah, so our family assistance program is really individualized financial and emotional support for families experiencing loss and hardship from vehicle crashes. There may have been a fatality, there may not. So it could be funeral expenses, it could be medical costs, grief counseling, meals. Maybe it's replacing loss of income while they're grieving or while they're with their loved one in the hospital. But it's also. How can we just be a support to these families because they really don't know what they need when they're you. As you know, when you're going through something traumatic, you don't really know what you need in that moment because you're. Your body and your brain adjusts and says, just focus on your loved one or grieving in that moment, and that's what we want you to do. So as an example, right now we have a father who just lost his wife and baby in a crash. His three-year-old is in critical condition in the hospital, and the funeral for his wife and baby is tomorrow and Saturday. And he was. He was like, what do I do? I don't, I can't leave my three-year-old. I don't want my three-year-old to be without somebody at the hospital. And so we're gonna step in and do that for him. We're gonna stay with his child at the hospital for two days. And we're gonna bring in some of our other families who've experienced this before, who can stay with this child care for him while his father's away. And I mean, can you imagine what it's like to turn your child over to someone that you don't really know that well? But that's what we're here for. We're here to just jump in and say, what can I do to support you so that you can handle the things that are more important?

Raylene Lewis: 9:30

That's phenomenal. It's, it's needed so, so badly and it reminds me of another conversation that we had which I think people can, can take to heart and really think about in the future when you're around somebody who's gone through such a traumatic event, injury or. Loss. You talked about the words that you use and how you know you're careful on what to say and what not to say to someone who is grieving. Can you talk about that? Because I thought that was so insightful.

Brianna McCulloch: 9:59

It's not anyone's fault, the words that they use because in a situation when you've had a friend or a family member who loses a loved one, you don't know what to say and it's very. Natural to just say, I'm sorry, they're in a better place. What can we do to help you? Those words, it's hard not to get upset, but you hear it a million times and you, you know, it's like I could scream if someone says she's in a better place again, you know, because I don't want her to be in that place. I want her to be here. And so that's really difficult. And then the word, I'm sorry, is the first. Your gut instinct is to say, I'm sorry to anyone that loses someone, but when what we've discovered over the last five years is when you say, I'm sorry, you're actually bringing back up grief within them and you're actually putting your sadness back onto them. And so it actually makes them more sad. And so trying to stay away from that and just saying, you know, I'm praying for you. I'm here for whatever you need. You know, a lot of people. Also disappear once the funeral happens. So trying to make an effort to say, I'm gonna stick around after that when they actually need someone, because when that settles down is the, one of the hardest times you really take a big crash after that point. And so it feels like the world is, is spinning, but you, you're stuck in one place. And so just continuing to be a support to that person and, and never expecting there to be a timeframe in which you feel like they should be. Okay.

Raylene Lewis: 11:34

I think that's true. People are like, well, you're gonna eventually get over it. Right? Or You have other children or stuff like that. And I'm like, this is not helpful Communication. No.

Brianna McCulloch: 11:45

No it's not, and it's, it makes them frustrated. And what's sad is when someone experiences a traumatic loss or something similar to what your family is experiencing, they can lose a lot of friends and family in the process. That they don't connect with anymore. People that just don't understand anymore, and that's okay. Some people feel like they're almost grieving the loss of their friends and family, and they feel guilty for some reason that maybe that connection isn't as strong anymore. But I think it's okay for people to understand that your friendships are gonna change. You're actually gonna connect with new people that understand what you're going through. And there's nothing wrong with that.

Raylene Lewis: 12:24

You're absolutely right, because we had people. When Kyler first had his hemorrhage that we thought would be around or we thought would reach out to us or talk to us, and they just totally disappeared. I mean, and that hurt because we had people who we thought were our friends who turned out not to be. But absolutely in the long run, the group that we surround ourself with now are far better, you know, reliable people that we know we could count on at any time. But the learning process and the learning curve was, was super, super hard for that.

Brianna McCulloch: 12:55

So there's a family that lost a child that actually started a book series. It's called Hope Unshakable. And they tried to tailor it to everyone in the family. So a lot of times it was just tailored to parents and they wanted to have something for kids too. So they have hope unshakable books for siblings. If you lost a sibling they have it for parents. Obviously they lost a child and they have it for grandparents that lost a grandchild. So we send books based on what they need and, and the pe you know, who in their family would like to have one. And then we also always send a Jesus calling book as just a way for people to. You know, lean on their faith in times like this because if you don't have faith, I feel like the journey is very difficult. And then we send a clinging cross, which is a cross that you can hold in your hand when you just are feeling moments of. Sadness, loss, grief, fear, anger, whatever it is, you can hold that in your hand and just pray and just remember that God is on your side. And then we send some things that may just help them in the, this is for more of a, in, in the moment, right after loss. We might send candles, bath bombs vitamins, melatonin to help them sleep. Really thinking about kind of the emotions that they're experiencing and how can we help ease that, even just for a moment. Tissues things, you know, just things that might comfort them for even just a minute. So it's, it's just to say we care. We also send a list of resources for them, grief counseling maybe a grief retreat. We send them a life after loss checklist, which is, you know, if they've lost someone. There's a lot of things you don't think about that. You can do, you know, canceling doctor's appointments that might have been in the future, that would be really painful if they called to check on that. So there's a list of things that you can actually take that list and assign it to someone who has said, how can I help give them the list and say, this is where you can start and let them check off those things. So we have a list that we provide as well, and we also provide some links to. How to write an obituary and how to plan a funeral so that people don't have to go searching for that stuff.

Raylene Lewis: 15:05

It, it's just obvious that you care so much because you understand what the, what the person is experiencing because your family has been there. And I think that's something that a lot of people who are going through a trying time need is to know that, okay, I'm surrounded by other people who have been through the same sort of thing or who are going through the same sort of thing that I'm going through. Cuz it's just so easy to feel alone during that time or to feel like nobody understands. Right? Nobody could possibly understand, you know, where I'm at or what I'm doing.

Brianna McCulloch: 15:39

Within days after, when Kailee's dad said, you know, we really need to do something here. He said, you know what? What can we, what symbol can we use as something recognizable that could remind people to put their seatbelt on or to check on their passengers? And he said, there's awareness ribbons for everything. There's bound to be one for seat belts. And he went looking for one and there wasn't. So he said, okay, well let's. Let's make one. So the ribbon looks like a seatbelt, so it, it kind of go, run, goes around and then clicks in the middle. We chose mint green because that was Kailee's color, her favorite color, and it's unique, and we really didn't ever find any other mint green ribbons. And so we started handing those out by the tens of thousands so that we could get them on vehicles and remind people, and that is really where the community said. You know, this is, this is really great what you guys are doing. And so now you know, I mean, our, our ultimate mission is to save lives around the world. And so we want that ribbon to be the nationally recognized symbol for seatbelt safety. So when anyone sees it, they immediately think, do I have my seatbelt on? Is everyone in my car buckled up? And ultimately we'll save lives.

Raylene Lewis: 16:51

That's fabulous. And if somebody wanted more information they wanted to reach out, they were like, Hey, I wanna donate to the program. Or, Hey, I wanna see what materials you have to see if I can use them to help you know, my loved one, or to make sure my school knew about them so that you could come and talk to my school. Where would they go?

Brianna McCulloch: 17:08

Yeah, our website is kailee mills foundation.org, and that's K A I L E E M I L L S foundation.org. And all of that information is there. We have links for all of our different programs and how to request one. If there's a family who's been impacted by a vehicle crash that needs help, there's a page of information where they can actually fill out a request form. For that or just learn more or get the resources. They're all linked there as well. And of course people can contact us on our website if they have any questions. And follow us on social media.

Raylene Lewis: 17:41

Well, you are amazing for putting this all together and thank you so much for all you do on that car accidents. They can, they can be like that stroke, that line in the sand where it's all before or after the event occurred, and it's really nice to know that there's a group out there that's ready, willing, and able to support if, if that, if you are someone you know is, is in that situation

Brianna McCulloch: 18:01

and you never know what's gonna happen, whether it's the driver of your car or somebody else that you have no control over. So protecting yourself. And, and realizing that it's not always about you. It's not about a ticket. It's about your loved ones that will go on grieving forever when you're not here. And that pain is so indescribable. And so just protecting yourself and remembering that to remind everyone in the car with you too, they matter. And just buckle up. All the time, no matter where you're sitting. And remember to tell others.

Raylene Lewis: 18:36

Thank you. Thank you for your time today. Thank you. In chapter 11 of our focus book, Suffer Strong. Katherine says The world is missing something valuable if people are not able to recognize and use their talents and gifts. Pain is a platform. She says the world needs more true and vulnerable. Stories of loss and struggle woven through healing and hope. Katherine explains that although it may not be an easy one, there is a path laid out for every person. It can be such a hard path that we may be tempted to quit or change course, but there is no need to waste energy calculating who is farther along in their path or whose path looks easier. Or better than ours. She refers to a verse in Galatians in the Bible that says, make a careful exploration of who you are and the work you have been given, and then do not compare yourself with others. Each person must take responsibility for doing the creative best you can with your own life. Katherine says in our search for our calling and purpose, the best place for us to look is right in front of us. Our limitations don't have to be our losses. They can be the avenues to our flourishing. If we have a pulse, we have a purpose. She says, we are here because there's more to life for us to experience and more for us to do, and more love for us to give. When we have lived through suffering, we think the end goal is to be comforted so that we can be comfortable, but we are not the beginning or end of our suffering. This is why community is absolutely necessary. You do not gain a true perspective on all you have been given, and you are not able to do everything by yourself. So our deepest hopes and fears must be shared with each other. When you take the time to hear the stories of struggle and loss and the stories of flourishing through suffering, your own calling becomes clear. Today's quote is by Ronald Reagan. We can't help everyone. But everyone can help someone. I always like to end our time together with a motivational song recommendation. I don't play the songs because of copyright laws, but there have been many times on this journey where a song really spoke out to me and help me with my day. Today I'm recommending you check out. "I said hi" by Australian songwriter Amy Shark from her 2018 album. Love Monster. Amy says it is a song she wrote as an anthem for anyone who is waking up every day fighting for what they believe in and challenging the universe. And as always, if you have questions, have a topic you would like to hear about, or a great song or motivational quote, 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 of y'all.