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Ever Onward Podcast
The Ever Onward Podcast is your go-to business podcast, offering engaging discussions and diverse guests covering everything from business strategies to community issues. Join us at the executive table as we bring together industry leaders, experts, and visionaries for insightful conversations that go beyond the boardroom. Whether you're an entrepreneur or simply curious about business, our podcast provides a well-rounded experience, exploring a variety of topics that shape the business landscape and impact communities. Brought to you by Ahlquist.
Ever Onward Podcast
When Loss Becomes Purpose: Megan Schomer's Mission with Rays for Rare | Ever Onward Ep. 83
When Megan Schomer learned her newborn son Corwyn had a combination of three ultra-rare brain malformations, her world was forever changed. Despite no clear diagnosis and no treatment options, Megan and her family chose to live fully, making the most of every moment of Corwyn’s short life. In this deeply moving episode, Megan opens up about the medical journey that followed — one filled with constant seizures, around-the-clock care, and an unshakable commitment to creating joy, even in the face of heartbreaking realities.
After Corwyn passed away at just four and a half years old, Megan transformed her grief into purpose. She founded Rays for Rare, a nonprofit that provides meaningful, non-diagnosis-specific support for families caring for medically fragile children — because most of that care doesn’t happen in hospitals, but in homes. From house cleaning and lawn care to emotional support groups and sibling events, Rays for Rare shines light into the lives of families often overlooked by traditional systems.
Today, Megan leads the organization full time, serving over 200 families across the Treasure Valley, and raising awareness for pediatric palliative and hospice care. She’s received numerous honors for her work, but her impact goes far beyond awards — it lives in the stories of families who finally feel seen, supported, and less alone.
Tune in as Megan shares her path from real estate to nonprofit leadership, what it means to choose quality of life over quantity, and how small, compassionate gestures can radically change lives. Whether you’re looking to understand the world of medically complex parenting or find a way to help, this conversation is both heart-wrenching and hope-filled.
Learn more, get involved, or donate at raiseforrare.org.
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Today on the Ever Onward podcast we have Megan Shomer. She is the CEO of Raise for Rare. Following the death of her son Corwin, she started a nonprofit that helps families here in the Treasure Valley with children with severe medical illnesses. It's an incredible nonprofit and story to tell and looking forward to share that today. Megan welcome.
Speaker 2:Thank you.
Speaker 1:This should be fun. We were just talking about both at the concert last night.
Speaker 2:Yes.
Speaker 1:Amazing, wasn't it? It?
Speaker 2:was amazing. It was a really good show.
Speaker 1:It's funny, I've seen him. This will be my third time. Oh wow, I've seen him. This is my third time.
Speaker 2:Oh, wow.
Speaker 1:Just for different circumstances. I saw him in Louisiana. My daughter-in-law was going to law school at LSU and he played at New Orleans and he played back-to-back with Guns N' Roses.
Speaker 2:Oh wow, I bet that was an epic show.
Speaker 1:In a torrential rainstorm. Right, remember that, maddie? Oh, you weren't there. Was that pre-Maddie? Oh yeah, so that was a while ago, but this was good. And then Jelly Roll was great. That stadium was packed. It was really awesome. I know that's part of the plan is to do more of those things and really use the stadium more. It's such a beautiful setting.
Speaker 2:It's a great space with a beautiful backdrop of the mountains and the hills. It was really really cool.
Speaker 1:Well, thank you for coming on today. We've never met, so this will be great. But I've been reading about all the things you've been doing and I'm not even sure how we got connected to get you on. Someone called and said you have got to talk to Megan. That's a big deal. And I said I looked it up I'm like, yeah, we've got to get on the podcast.
Speaker 2:Well, thank you for having me. Yeah, I haven't really put myself out there that much, but I know that it's to further our work, and so that's what I want to do.
Speaker 1:That's great, yeah, so tell us a little bit about you.
Speaker 2:Third generation, idahoan, born and raised. I was born at St Luke's downtown, so been here my whole life and I was in real estate top producer. Loved that, and then, in 2012, I had my second son, and from in utero I knew something was going on with him, and we didn't know what it was, though, um, so that was a long journey.
Speaker 2:Your first child was healthy healthy, typical um born in 2010. So, um, 18 months later, um, I was pregnant with his brother. While they're 18 months apart, um, and in utero, they noticed when I went in for my gender reveal that something was going on with his brain. Ventricles were dilated, just things weren't right. But they didn't know what it was.
Speaker 2:So I was highly monitored, went through the pregnancy, highly monitored and when he was born, we didn't know if he would be born because they didn't know what we were looking at. His scans were sent worldwide from an MRI in utero and we're in the NICU, had an immediate referral to Seattle Children's. Still weren't sure what was going on, but they knew based on what was going on with his brain, he was going to have epilepsy, seizures, things like that. They just had thought it would be probably closer to nine months to a year before that started and they started the day we left the NICU and so sent us into treatment immediately of managing symptoms and referrals to neurology and all the specialists down here. And while we waited for that Seattle children's referral because it was he was born in and that Seattle children's referral wasn't until June of the next year, oh, wow.
Speaker 2:Yeah, so we wanted to see—he's a world-renowned specialist. He studies rare brain malformations in children and so he was the best referral for what we were dealing with, and so we managed symptoms, and they called us that November.
Speaker 1:And symptoms were seizures.
Speaker 2:Yeah, severe seizures, infantile spasms he had nearly every type of seizure, so just managing all of that.
Speaker 1:It's terrifying.
Speaker 2:Yeah, and to have a baby doing that is just.
Speaker 1:I think of all the things, all the symptoms that you know as an ER doc you would take care of and honestly, like watching your kid seize as a parent, let alone your newborn infant child whatever go through whatever kind of seizure, let alone multiple kinds. It's just you feel so helpless.
Speaker 2:Oh, for sure, For sure. Our first ER visit was to St Luke's Meridian and that was before we understood the children's hospital and how everything worked. I mean, he was seizing and it was uncontrollable. So took him in there and it was hour and 20 minutes and the yard doc ended up putting his arm around me and was like there's nothing more we can do, just wait it out. So, yeah, terrifying for them too. They were kind of like why are you so calm? And I'm just like, well, me getting worked up.
Speaker 1:It's him. It's actually a pretty good point you bring up, because I mean, I think there's sometimes where the providers are terrified yeah. You can tell too, there's nothing worse than like, especially with like those kinds of seizures where you've kind of done everything you can do and you've kind of maxed out your I don't know what else to do. It's a very difficult place to find yourself as a provider.
Speaker 2:Well, I'm sure being the one with the answers too, we're all looking at the provider.
Speaker 1:Stop this seizure.
Speaker 2:Right, but nobody knows what he has and why it's happening.
Speaker 1:So they didn't have any idea at that time. Like the diagnosis, only there was a severe brain malformation.
Speaker 2:They thought it was a form of lisencephaly, which ended up not being so. We went that November. So he would have been from April to November. They had a cancellation at Seattle Children's so we went up there. It was a week of Thanksgiving, snowstorm, all the things that could go wrong went wrong. They did an MRI up there. All the things still couldn't figure it out. So they said keep your appointment in June. So continued with symptoms, went back up that June and he did all the tests. Dr Dobbins was amazing. He did all the tests and still couldn't figure it out.
Speaker 2:And so, right before I left, he just kind of threw his hands up. He's genius and so he has to have a handler. He's he just kind of was like. He threw his hands up and he's like do, and so he has to have a handler. He's he just kind of was like he threw his hands up and he's like do you notice anything different from him? And then his sibling he's like it could be anything, please. Just what do you know? And I was like well, he has this little patch of skin that's a little bit of a different color on his forehead, something's so minor he didn't even see it in all these evaluations. And he just looked at him and he looked at me and he goes I know exactly what this is. And he ran out of the room and his handler's like, well, he'll be right back, he'll be right back, it's okay.
Speaker 2:And he came back with a piece of paper. He's like I've seen this once. He's like it happened in 95. She passed in 97. So don't expect a long life with him. You to live your life to the fullest.
Speaker 2:And here's what it is. And he said there might be more cases. They're just not diagnosed in a way that you can research them. So he had a combination of three rare diseases. Long story short, they put him in a natural case study and figured out when it happened, how it happened, and essentially it was a birthmark on the brain, but he had, instead of those deep grooves in his brain, his brain was cloudy, shaped, he had a form of hemimegalencephaly, but it affected his whole brain and so there was no operations or anything that could be done and we were kind of just sent home with well, there's nothing more we can do. They took all the samples, biopsied it. They were able to biopsy those cells that they took from the skin on his face and tell exactly what happened in the brain, because those were the same mutations. So it was a really fascinating process and terrifying at the same time, but that's how we got our answers. So we just went home and I wanted to live life to the fullest.
Speaker 1:We traveled, so, at that point, though, they said, hey, this is what it is, yeah, and it's so rare, you know, mm-hmm. To his point, what was his name? Dr.
Speaker 2:Dr Dobbins.
Speaker 1:Dr Dobbins like to his point. Yeah, I know what this is, but what was it like as a parent being told that?
Speaker 2:It's devastating. I think he told me. The most impactful thing, though, was he held my hand. He's like it's devastating, I think he told me. The most impactful thing, though, was he held my hand is like it's not your fault, you know, because, as a parent, that's what you're thinking is you're thinking did I do something? Am I a factor in this? And it wasn't anything that I did or anything, and so, um, but it's, it's a devastating thing.
Speaker 1:Isn't it powerful being told that yes?
Speaker 2:it is. That's what. That's what I mean, and I would encourage any provider that can say that to say that, because that really does make a difference in the parent's life and just understanding how these things happen.
Speaker 1:So, yeah, but it's often overlooked. Right, right, and it's a small thing to say really Well, and I'm glad you brought it up because I think I don't think it's unintended I mean?
Speaker 2:I mean, I don't think you're trying to not say it, it's just like you think.
Speaker 1:Well, that's of course. The mom knows that these kind of genetic things happen as cells divide and kids are born, and she's not going to blame herself, right? Why would she blame herself? But we do you do right, and I guess that's the other message for people listening out there if there's any providers is that it's powerful to hear that from somebody.
Speaker 2:Yeah, just that reassurance that you didn't mess up. This isn't anything you intentionally did, and I think it's just parent guilt, right. Even if your kid is sick, you want to do everything possible or you think, well, maybe I shouldn't have taken them to that thing and they wouldn't have gotten sick. You just kind of run through all the scenarios, right. So this just takes that to a whole other level.
Speaker 1:Well, and you just like until you're a mom right.
Speaker 2:Until you're a mom.
Speaker 1:And you love this child more than you've loved anything and you would do anything for it. It's, it's a it and I like, I think, like. I think dads are great too, yeah, but they're not moms right right well, especially in those infant years yes when they're so reliant on the mother yeah, yeah
Speaker 1:yeah, so I I've said this before on this podcast, but but my daughter, when she held her first baby, I just whispered in her ear and now you know how much I love you. Right, Kind of thing. It's not a this world, this love that happens. So you get the news.
Speaker 2:Talk through that.
Speaker 1:Because that's a devastating thing to hear, and you're clearly a very strong person, because we're going to talk about what you're doing with all this, but what did you do with it?
Speaker 2:I looked at it as I don't know how long I have him, so I'm going to do everything to make his life the best it can be. I wanted quality over quantity, in the sense of I was willing to take certain risks to make sure he lived a life. I didn't want to go home and just stay there and shut in and not live. And his neurologist said that's what most people with a diagnosis like this do they just shut down. Because I had asked him, I said can I take him to New York City? And he kind of paused and he looked up and he's like yeah, you should go and here's a list of things you should do while you're there. He's like most people don't ask these questions, they want to just shut in and kind of live in a bubble. And I was like that is not what I want. I don't know how long it happens, so I want us to have all the memories as a family that we can.
Speaker 1:That's great.
Speaker 2:Yeah, so that was my mission. So we went to New York City, went to Seattle, went to Disneyland multiple times, all while managing symptoms. We had lots of visits when we would end up at the hospital, we were always in the PICU because he was such high-level care, he was on a myriad of medications and there was no support groups, there was nobody with what he had, so it was very isolating. And I tried to join some other support groups of one of the rare diseases and there's some bullying in that. They said, well, he doesn't have exactly what we have, so no, you can't join this group. And I was just like, but this journey is similar, right? And so all of this was embedding in me throughout this journey and ultimately he ended up passing away when he was four and a half.
Speaker 2:He had several bouts of pneumonia that year and that was finally what took him. But he did. We lived every day to the fullest and did everything together, and I mean taking care of him. I didn't have REM sleep for five years because there aren't good seizure monitors for what he had, and so I basically slept with my arm across him and monitored him myself. I could hear breathing, I could hear movement, you know, just feeling that as the mother, you're just like right there. So it was like having a newborn baby for four and a half years.
Speaker 1:And I know, I know I read this, but what was his name? Corwin Corwin.
Speaker 2:Yes, and I picked that because in utero, corwin means companion of the heart, and I didn't know how long I'd have him, but I knew he'd always be in my heart, so that's where that came from. Wow, yeah.
Speaker 1:That's awesome. And so what about your older son?
Speaker 2:Yes, his name is Maxim.
Speaker 1:Maxim Mm-hmm and talk about how Maxim handled this and what was it like for Maxim.
Speaker 2:Well, he was 18 months older. So for him that's all he knew. I mean, when his brother was born we were just thrust into this medical journey immediately and so that's all he knew. That's his brother and that's fine. And so that's all I knew. That's his brother and that's fine.
Speaker 2:And it did make it difficult with other sibling friends like friends that had siblings because they would bicker and banter and he's just like why are you doing this? Like I would never fight with my brother, kind of a thing, because he couldn't talk. So I mean, corwin never developed past like that of a three-month-old so he could coo and smile and laugh and all those things, but he never talked. He wasn't going to fight his brother, he wasn't going to steal his toys or anything. So Max just found ways to connect to him. They'd read books together, he would drive his toys on him when he was really little and just you know he liked to just be in the same room and hang out with him and, like I said, go on all these adventures we did.
Speaker 2:But for him it's difficult having a sibling like that because and this is something we're kind of featuring for this year I like to always find a new feature of the year, of a perspective of this journey. So this year is siblings experience, and siblings of medically fragile or medically complex children are called glass children because they're often invisible in the family dynamic. They are neglected, not intentionally, but when the sibling has such high care and such high needs. Their needs are often overlooked, because it's literally life or death with one child, and so the other child sometimes just feels left out or they don't understand that therapies and appointments aren't just attention or something fun. They just see it, as you know, that my sibling gets to go do all these things and I don't have them. So we'll get into more about that, how we're helping those siblings.
Speaker 1:And so when he passed, Maxim was.
Speaker 2:He was six Six.
Speaker 1:Mm-hmm, how did he handle that?
Speaker 2:He handled that. Kids grieve differently and I really put a lot of thought into how we brought him into that. And so when his brother I mean anytime he asked a question, I felt if he could ask the question he deserved the answer, the honest answer. I mean as delicate as it could be, but if he can ask the question he deserves the answer. I don't want to hush him or put it away. So we, um, from the day his brother passed, we actually had him on hospice, he was at home. It was the best, worst experience you could have. Um, it was a really beautiful moment and I wouldn't trade it for anything. I mean to have that it's. It's so powerful to have it on our terms, that that moment of passing. But, um, we were at home and he had come home from school and we knew it was eminent, and so I had told him. I said I'd taken him in the other room and just said your brother is going to be passing away, he's not going to be here with us, so you need to go say goodbye. So we went in and, yeah, I was going to say I don't want to cry, but we went in and he said his goodbyes and then he went with my aunt when he felt he was ready and I said he won't be here when you get back. And so, sure enough, later that evening he came back and he walked right in there and he looked around and Max is very matter of fact. So he's just like, well, yep, you're right, he's not here. So, okay, this is what it is. And from there he had questions and everything.
Speaker 2:And then when we had the viewing there was a whole discussion about that and he became he needed a job. I've I saw very quickly he needed a job. So I was like, why don't you give people tissues? So he became we called him tissue enforcement, because if he saw a tear you were getting a tissue. But it let him be involved in his own way, right.
Speaker 2:And so then at the service even I had, at the casket we had, were his cousins and anyone who wanted to could go write and draw on it, and it really just allowed people to connect through art and their messages. But it allowed children to be involved in that grief process. I feel like they often get lost in that grief process. So giving them space to be a part of that in whatever way that looks for them. So letting them color on the casket is letting them, you know, grieve in their own way. And then, at the Celebration of Life, max had a little station set up where everyone wrote notes to his brother and he ran that. He was six but he ran that station and here's what you're going to do, and it just gave him purpose in that whole experience and allowed him to grieve in his own way.
Speaker 1:So, yeah, him to grieve in his own way. So, yeah, death, you had time because you kind of knew right, right, some people don't, but it's so final and that's the only way I can describe it, whether it's sudden or expected, or a child or a teenager or your mother or um it, you, you. You don't have to wonder too much why there's so much poetry written about it. I mean, I like emily dickinson, like has so many different, but it's just so indescribable the feelings and the the kind of loneliness and finality of it I guess.
Speaker 1:Yeah, I had a nephew that lived with us, that you know. It's been over 10 years now, but I still think about him.
Speaker 2:Yeah.
Speaker 1:All the time Like it's. All the time it's with you forever. Like he never left, but in a lot of ways. But it's just and kind of some that gnawing pain, or loneliness, or emptiness.
Speaker 2:It's an emptiness.
Speaker 1:Emptiness.
Speaker 2:Yeah.
Speaker 1:It just doesn't go away.
Speaker 2:Right, right.
Speaker 1:And it's probably a good thing it doesn't, because it keeps their memory it keeps their memory, but you just miss them. Right, it's that thing, you just miss them.
Speaker 2:Yeah, yeah.
Speaker 1:You can only imagine when it's your child.
Speaker 2:I can't.
Speaker 1:I can't imagine there's some sometimes when empathy kind of doesn't work right.
Speaker 2:In certain situations.
Speaker 1:Right yeah, Well, thanks for telling your story, so this sparks you.
Speaker 2:Yes.
Speaker 1:Like, uh, like this was it like. I'm going to do something about this.
Speaker 2:So I was um at the time. I mean the year he passed, I was a top producer in real estate and so my son passed in November. December, I was at my company Christmas party and they were kind of like, so you're going to do your own brokerage. Now they really wanted me to take the brokerage to the next level. And I just I looked at him and I said, no, I, my heart is, I've seen too many things, I've seen too many gaps, I've seen too much neglect in the community, just that this population is really overlooked. And I wanted to shine a light on them and I wanted to be practical about it. And so I told them my idea and they were all you know. Several of them were just like we're in, we want to be a board members, let's go.
Speaker 2:And so I mean these were people, some of them I'd worked with for 15 years. I mean I stayed at my at that brokerage, I'd been there over 10 years and so we were close, we had worked together for a long time. But they were, they were in it. And so I was like, well, I need, I need a little time. I mean this was one month later and so, january, they were like, okay, let's do it. So they kind of nodded, you know, pushed me along and nudged me along and I had a client that was a nonprofit attorney and so I reached out to her and she's amazing, she's the director of Idaho Legal Aid now. Sunrise, which her name is perfect because the sun I wanted to be light and warm to our families. She helped us get everything together and we were from his his passing. Within three months we were 501.
Speaker 1:Wow.
Speaker 2:So yeah.
Speaker 1:What a tremendous way to take energy and emotion and pour it into a new passion that helps people.
Speaker 2:Yeah, I don't remember who says this, but they say when you go through something like that, lose yourself in the service of others, and I cannot express how much healing comes with that. It really does it really helps.
Speaker 1:It's a hard thing to and you have to be careful when you tell people this but whatever you're going through in your life, whether it is something as horrific and as tragic as the loss of a child, versus a hard thing with a I don't know relationship or work or whatever that it is like living life arrows out and like go serve someone, go do something, it doesn't it gives you that purpose.
Speaker 1:It doesn't come across well when they're like coming to you and saying, hey, what should I do? I feel horrible, it's like it's me, me, me, and you say, go find a way to put that energy somewhere and watch what it does, because it'll bless you it really does.
Speaker 2:You're a great example.
Speaker 1:This is a great story. Thank you, so you started your nonprofit.
Speaker 2:Yes.
Speaker 1:Did it start as Raise for Rare?
Speaker 2:Well, I did not want this name, but this was the first name. The first name was Corwin's Cause. It was named after Corwin, but I never wanted it to be about him. It was about these families going through this journey now, and so we took that name initially, just because it made sense. We really had so much momentum that we didn't want to hold back on a name. So we were like we'll figure the name out later, let's go, and doors just kept opening. So we were 501.
Speaker 2:We approached Tricidio Homes very early on about the idea and they were just like we're in. They hosted our first fundraiser. They've been our biggest supporter from day one to now and so that's been an amazing relationship to have John now sits on our board and it's been incredible the support they've offered. But just having all these doors open and I actually had went to the local children's hospital and I was kind of like I wanted to meet with leadership of here's where things went great with my son, but here's some things that are lacking in the system, so advocacy was a big part of this.
Speaker 1:How did that go?
Speaker 2:They actually looked at me and said nobody's ever come to us and talked to us like this. Come help us do better. And so I'm on, I think, five or six different advisory committees. At that time, pediatric palliative care did not exist in our community, and that was something I was very passionate about, because when you're dealing with all these different specialists, pediatric palliative care is a little different than adult, and the reason it's important is because when you're dealing with all these different specialists, I was put in a position specifically where one specialist said he needs this intervention or he's going to die.
Speaker 1:I didn't think about that.
Speaker 2:And another specialist goes if you do this intervention he's going to die. And they put the parents in the middle of well, what do you want to do? Do you want to risk his life, do you not? Either way, it doesn't look good, and so palliative care comes in and does goal setting and helps families decide what interventions are right, with a provider on their side, not kind of putting them in the middle of these situations. It helps them navigate the system and then, at appropriate time, move them to hospice if necessary. So that just didn't exist and I just thought as a children's hospital.
Speaker 1:It's just I'm like, of course it didn't. I mean, it just is a. It's a unique intersection of a lot of subspecialists that are, you know, and then you are the parent, you're the advocate for the child, so you would get stuck right in the middle of that.
Speaker 2:Yes, well, and they had had kind of all these different diagnoses. They were kind of in their own silos oh yeah.
Speaker 2:So I said, but they all would benefit from this program. And that was the aha moment of like, oh yeah, okay, let's build this program. So I feel so fortunate they let me be part of the needs assessment to interviewing the doctors and the social workers and the whole team, and we're still heavily involved with them and in fact the, the doctor, sits on our board and so does a social worker. I mean it's been an amazing full circle relationship. But just advocacy was a huge part of our work. And then I really wanted to be practical.
Speaker 2:So we go in and what I found was there's a lot of charities when you have a sick child that go to the hospital and they bring gifts and toys, and that's all great, but a medically complex child is not at the hospital. That often gifts and toys and that's all great, but a medically complex child is not at the hospital that often. They're usually at home. I mean, I had an ICU set up in my house and rarely did we go to the hospital, because when you go in with one thing, you come out with another. So you really try to avoid it because you have a good place to get sick.
Speaker 2:Right, right. So we had an ICU in our house and I was just like everyone takes that support to the hospital. What about the families at home? So I was just like, why don't we do practical things? So we do things like house care, lawn or house cleaning, lawn care, snow removal really practical things that just take something off their plate, and the response has been overwhelming of just how helpful that's been for the families. We also have added support groups. Again that community. I looked at it as there's over 8,000 rare diseases and you could have one of them, a mixture of them, it doesn't really matter All forms of pediatric cancer, so stuff you learned as you went through the thing, which is hey, what do you?
Speaker 1:So let's talk about the term Sure, medically fragile is a term and give us a little more information on that.
Speaker 2:So that's a child that's high acuity. They have multiple specialists, they require therapies or machine interventions to live. For the most part they're total care kids, and so there's more than 7,400 in our community. Wow yeah, the need is much larger.
Speaker 1:There's 7,400 in our community.
Speaker 2:Wow yeah, the need is much larger. There's 7,400?.
Speaker 1:Mm-hmm. Yeah, and what's your reach?
Speaker 2:We are within 30 miles of the Children's Hospital as our main service area, and then we do serve some rural families. We can't do the in-home services in the rural communities, but we do send them a gas card because we know they're coming in for all these appointments.
Speaker 1:So there's 7,400 kids in the healthcare in our local pediatric healthcare system. Yes, Wow, there's more than that.
Speaker 2:That was last year's number. I don't have this year's number. What a like it's a huge need. Um, so when we started in 17, it was, I think it was 1,850 families. So from 2017 to 24, that's how much the Valley has grown with these kids, wow, yeah.
Speaker 1:What do you see in common? Like you, because you went through it and now you've been. So you've been the director board and it's your, your 17. So you're eight years in.
Speaker 2:Yes.
Speaker 1:Probably seeing a lot of ways that these families have in common, kind of, and they're probably looking at you going, oh, thank heavens, Like you, you get us. You know what. You know what we need.
Speaker 2:Yeah, in fact, a lot of the families say you know what we need before we do. That's been a very common thing. That's been said to us and I'm like, because I loved it, you know. So I gave up my real estate career in 19 to run this completely. Our board that was in like the five-year plan, but the board was like somebody needs to run this now and you're the one we want to do it.
Speaker 1:So you do it full time and talk about? Can we go to your website?
Speaker 2:Yeah.
Speaker 1:So the URL raiseforrareorg and let's go through some of the services you provide and sure, and some of those those details to get this information out yeah, so the applications on the website, um, people can just go fill it out and it's reviewed by a medical team.
Speaker 2:But, um, if you scroll down a little bit, you can see our. So we do those in-home services that are really practical. Like I said that, lawn care, housekeeping we do snow removal. Support groups have become really big. We do four of those a month. That's where the caregivers can get together and share the highs and lows of this journey. We used to do those virtually but we found in-person connects a lot more Connects people better.
Speaker 2:Yeah. Yeah, there's something about during COVID and everything. We did those virtually, but as soon as we could have them in person. These families are really isolated, and so I think anytime they can get out, they really do appreciate that opportunity.
Speaker 1:And you said it early on when you tried to join some groups that were maybe not inclusive. Right, did that help you and teach you what you would do when you tried to join some groups that were maybe not inclusive?
Speaker 2:Right.
Speaker 1:Did that help you and teach you what you would do when you're out recruiting and how you make these feel inclusive for folks?
Speaker 2:Absolutely. Yeah, I look at it as the journeys are different but the feelings are similar, and so it doesn't matter what that label is. You're all on a complex medical journey, going to the same children's hospital, seeing the same specialists dealing with a lot of the same interventions, or G-tubes or CPAPs or all these different types of cares, so that label doesn't really matter.
Speaker 1:Let's pause for a little bit. So I think, for people listening, I don't think. Well, maybe, unless you've been around it some way which I had the opportunity to be around it a lot, because that's where people ended up is in the ER.
Speaker 2:Right.
Speaker 1:But you talk about this total care, right? So a G-tube is a gastric tube, which is a permanent tube that is placed directly into the stomach and that's where the feedings are given on a routine schedule. And there's a whole bunch of science and there's a whole bunch surrounding feeding tubes, of how you use them, and then there's the care of a feeding tube, because the feeding tube goes straight from the stomach to the exterior. There's a lot of problems and complications that come with feeding tube. That's the feeding tube side. So then there's respiratory stuff and that's got its whole thing. And, depending on the kid and whether their diaphragm works and what kind of breathing support they need, is it at night alone or is it during the day? Do they have a tracheostomy tube or not? Are they on a ventilator or not? I mean, there's just so much and it's an entire thing.
Speaker 2:And the parents have to learn all of these things. They can't. There isn't a specialist for everything I mean, as in they have to do these cares at home.
Speaker 1:Yeah, so I mean it's a lot.
Speaker 2:It's a lot. It's overwhelming.
Speaker 1:So you take each organ system right. So you look at like GI stuff going in, stuff coming out. How are you dealing with all of that? You take respiratory everything from. How are they oxygenating, how are they breathing, are they getting infections? How to maintain all this? And that's just the start. Then take meds.
Speaker 2:Oh yeah, then the meds. Can I mean the routine of them? How?
Speaker 1:they're delivered. When they're delivered, what do you do as needed meds?
Speaker 2:Right, Rescue medications. Rescue medications, I mean you start going down the list and oftentimes these folks have different backgrounds and capabilities that they come into these kids with and then You're just presented with okay, you've had a new admission in the hospital. Now we're adding a new, a new thing to maintain this new symptom and a new thing and it some families experience it all at once. I mean we have some kids on services that are like non-fatal drownings, so they go from a typical kid to total care. So those families are learning it all at once. Where mine was incrementally, I learned one thing at a time, kind of, but some families are thrust into it all at once. So it's very overwhelming either way, but it's a lot to take on.
Speaker 1:Health care has changed. It just has. I mean, it's just different than it used to be. I think it's a lot of pressures on healthcare.
Speaker 2:Yeah.
Speaker 1:A lot of pressure from a lot of different directions, and so even with primary care it's hard. But I think one of the things you've mentioned a couple times, the so there's the nuts and bolts of taking care of a kid, which we've talked about, but then there is the. It's almost the emotional and mental drain of being the one in the middle. You've brought it up a couple of times, but you become de facto the care provider that's coordinating all these specialists.
Speaker 2:Well, the specialists, the insurance like the DME. So the equipment I mean you're navigating all of that, it's just you're navigating all of it.
Speaker 1:So DME is durable medical equipment. It's a whole other thing. So if you think about everything related to each organ system has its DME required and how all of that gets maintained and delivered and paid for and used, and then when it goes, when it has a problem that you have to troubleshoot, I mean talk about overwhelming- it is.
Speaker 2:It really is overwhelming, and unrelenting right. It never ends, 24-7, 365. Yeah, yeah.
Speaker 1:Didn't sign up for it.
Speaker 2:No right.
Speaker 1:What are some of the common things you see out of the parents in these sessions? That one it's probably great just to talk about this with others. Your cohort. Your cohort is a very unique group of people dealing with the same thing, but what are some things you hear from them?
Speaker 2:Well, they go from everything. It's highs and lows. So laughing about things that probably the general public would be mortified that we were laughing about, right, just some things that happen in that journey. But then there's also ways to navigate cares. So just helping each other.
Speaker 2:Oh, I found this life hack, essentially of we had one kid that was vomiting, like excessively, I mean we're talking the mom she said she was changing the bed every couple hours all night long. And so another mom said, well, just layer blankets. So then when this happens, pick them up, pull it out, put them down, you don't need to be changing the bed. And so it was just kind of that aha moment of I mean that just helped her tremendously. I mean just kind of those moments of I've lived this, here's what worked for me, and just imparting that wisdom onto other families. So that's been really helpful to see navigating which specialist for which treatment and intervention did you use and what did you like about them, what were your concerns, what would you do differently. So just all of those conversations that would go into big decision-making, I mean do you find some people are hesitant to come to group therapy and engage?
Speaker 2:Yeah, we see that for sure. I mean we serve over 200 families. I think we have, as of yesterday, 212 families on our services and there's probably only about 20 that attend group regularly. So I mean there's a lot of room for more to join. But I think time too too is another factor the ability to get mental health support. We do have a licensed clinical social worker that runs the groups and has now moved into our office and offers individual sessions, so that's also allowed families to come in on their own time. That's great.
Speaker 1:Yeah, that's great. This is going by fast. I want to make sure we get through. So you have your organization. What are some awareness things, ways people can get involved if they know someone that may not know about you and what you do, and then how can people help?
Speaker 2:Yeah, I would send everyone to the website. So that has everything from our video explaining our work. You can fill out an application, you can donate directly on the website. You can sign up to volunteer. We need a lot of volunteers. We do events for the families as well, so we do six events for the families as a whole and then we do four sibling events. We do a sibling event every quarter just for them to have a special time. So we need volunteers for all these events. Between support groups, family events and fundraising events, we run 60 events a year, so we need a lot of help with the event support.
Speaker 1:So anyone out there that has some extra time where they want to volunteer for an organization that. I mean this is a great place to go put some time and you're supporting the families through different events you put on, so you probably have people also like to be led. So you have pretty clear hey, volunteer, we need these things. You put them to work right away clear direction on what they'll be doing.
Speaker 1:That's awesome. So there's the volunteer page, and then are there any other? Do you have fundraisers throughout the year or other ways people can participate?
Speaker 2:Yeah, we just finished our golf scramble, which was amazing. Sold out record numbers this year, so that was awesome. And we have cookies for a cause coming up. That's where the local cookie coalition gets together. They make those beautiful, highly decorated cookies, donate them all to us, so then all the proceeds go back to the organization I mean there's. Last year there was about a thousand cookies, so there's a lot of cookies to sell. That's coming up on August 9th and it's at the old Intuit buildings I don't know what their new name is going to be called.
Speaker 2:But right there in Eagle at the bottom of the hill below Chinden. So that's where that is. And then we also do a Sunshine Gala in September, and that's at the Chateau in Eagle as well.
Speaker 1:That's great, and that's at the Chateau in Eagle as well. That's great, that's fantastic.
Speaker 2:Well, this is awesome, thank you.
Speaker 1:Appreciate it. And so how old's Max now?
Speaker 2:He is 14.
Speaker 1:14. So he's grown up with the organization.
Speaker 2:Oh yeah, I mean it's part of his heart. I mean he gets in at those events and he's not afraid to touch kids in wheelchairs or he's very comfortable with this whole thing. And I feel like it's continued. That memory of his brother for him, of this is a reality in our world and we're not going to look away from it. We're going to step up and help. Wow yeah.
Speaker 1:Powerful.
Speaker 2:Thank you Powerful stuff.
Speaker 1:Thank you for your example. Anything else we should know?
Speaker 2:Um, I don't know. I do think that, um, in the Western world, we kind of look away from things that are hard and things we can't fix and things we can't find a cure for, and that's kind of why these families are in the shadows is there isn't a lot of um light or um there's't a lot of light or there's not a lot of exposure for them. You're not going to see these families out that often. I mean, their kids are complex, so you're not going to see them out that often. And so creating these events and these supports for them, it's really life-changing. It creates a huge impact in their lives and I would encourage people to go look at the videos of what a day in the life of a family is like.
Speaker 1:Those are on your website lives and I would encourage people to go look at the videos of what a day in the life of a family is like it is.
Speaker 1:You know, I'm sitting here listening to you and thinking, um, I think we live in an incredible community. Oh, absolutely, it just is like it's just never. I mean, it never ceases to amaze me just how generous and giving people are and how there's so many nonprofits that step in when there's need and go do stuff With that said, with this population, you're taking a very underserved population and a population of where people may not know how to interact.
Speaker 1:And so I think the other good you're doing is probably a lot of education and teaching people. Hey, that it's okay when you just said that your son is not afraid to go up and talk and push a wheelchair, or I mean, there's a little bit of that right, I think, with just the general population of just like hey.
Speaker 2:Hesitancy around it yeah.
Speaker 1:What do I, what can I do, or what do I say, or I don't want to.
Speaker 2:You know what I mean, and so I think, just awareness of hey, these folks are out there and they need your love, and support. Well, and they're your neighbors, they're your friends, your family, I mean, yeah, they're all around us.
Speaker 1:Wow, well, raise for Rare. What a great name and big sunshine thing. And thank you so much for what you're doing and for coming on and letting us know how we can help and appreciate what you're doing.
Speaker 2:Thank you for the opportunity. I really appreciate it.
Speaker 1:Thanks everybody.