Dave Smith was only nineteen years old when he started working for a 4-H Center as a summer camp counselor where he met Tom Baker and his wife Sheila for the first time. Little did he know that meeting the couple would set his path on a rollercoaster journey of love, compassion and healing for the next 35 years. Tom founded Special Love, a camp for children with cancer, in honor of his daughter Julie who lost her battle against lymphoma in 1976. Tom very recently passed on and Dave pays tribute to him and shares the emotional triumphs and challenges of working with children who have cancer. Dave hopes to preserve Tom’s legacy and enrich the lives of the children and their families through programs and events tailored to children with cancer. —
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Dave Smith Paying Tribute to Tom Baker of Special LoveWelcome, Dave Smith, CEO of Special Love, Inc. I'm excited to have you here. You have personally been a part of my life since I was a child and the organization. It's had so much of a profound effect on me. So much of my own personal history ties back to Camp Fantastic and Special Love Inc. I'm excited to have you here so that we can highlight what Special Love is and what the mission is and your journey because you've been there 30 years. Welcome. Thanks you. It's a pleasure to be here. What happened that reconnected us or what inspired me to invite you to come on the show is that Tom Baker, who was the Founder of Camp Fantastic and Special Love passed on. You had sent out an email and shared the eulogy and your own personal story with Special Love. I thought that this is a great platform to share about Special Love and how it started and who Tom Baker was, what it's about and how you got involved. If you can give us a bit of that story about who was Tom, Tom and Sheila, and how did this all begin? Tom Baker and his wife Sheila live here in Winchester, Virginia. It was back when I was nineteen years old working at the 4-H Center in Front Royal as a summer camp counselor while I was in college that I met Tom and Sheila for the first time. They walked in just after we'd finished for 4-H Camp unannounced, came in and said he has to talk to someone about starting a camp. John Dooley was the director of the 4-H Center at that time and my summer boss. He called me into the meeting only because I was the last summer staff person still there. My college started the latest of anyone. He called me into that meeting and Tom and Sheila shared that their daughter, Julie, had passed away in 1976 from lymphoma. At the time that she was only treated for a year and that was at the National Cancer Institute. She didn't get the opportunity to go to camp or do summer activities because like a lot of children who are on treatment, especially back in those days, she was sequestered and out of the public eye for most of her illness. They had come across a camp in Upper State New York that only dealt with kids with cancer and it was kind of an epiphany for them. Tom later said it was the closest thing he's ever had to a true calling that they need to start a program like this in the DC area. They walked into the 4-H Center site on scene and I asked John if he could do a camp similar to the 4-H camps that we were already running, but do it for kids with cancer. John, as fate would have it, had hours before hung up the phone with another gentleman who wanted to run a special needs camp but didn't have the resources and it wasn't going to work out. John was already primed for the task and when the Bakers came in unannounced and made that pledge, John said, “We can do that. I was already ready to do that.”John and Tom went to the Head of the National Cancer Institute at the time, Phil Pizzo, and said, “How hard would it be for your medical staff to see these kids and treat them while they were on camp?”The NCI did something that was unheard of at the time and unheard of even now. They enrolled every kid who came for the week of Camp Fantastic as an NIH patient for that week and gave them the malpractice insurance and the legal right to treat these kids with the same chemotherapy that they were taking at home. The significance of that is that the kids could get their chemotherapy at camp and they didn't have to either be transferred back and forth to a hospital or they didn't have to sit at home and pass on camp because they were too sick. They could get treated at camp as if they were at the hospital and then go back to having a normal camp activity in between treatments. That was unheard of at the time and it's still even with almost 200 cancer camps around the world, there are very few that can handle kids with the acuity that Special Love and Camp Fantastic is able to handle. That was our first week-long camp, Camp Fantastic. We had 29 kids that first year and we had now about 260 families a year through all of our programs. One of those families where the Holland’s. 1983 was your first camp, is that correct? Our first week of Fantastic was ‘83. It was almost a year to the day after Tom and Sheila walked into the 4-H Center. They raised enough money to run that one week of Camp Fantastic, but they knew right away that the kids were not going to be happy with waiting 51 weeks to see each other again. They knew that one of the reasons why they only got 29 kids that first year was because there were parents who couldn't even fathom the idea of letting go with their child for a week when they hadn't been out of the hospital for a year. We realized that in order for the parents to have a trust in where their kids were going to end up for camp, we needed to have family camps over the weekends so that moms and dads and siblings could also see what this was all about and they could meet some of the staff and develop some trust and some assurance that their kids would be okay while they were gone for a week alone. Special Love was 501(c)(3) that the Bakers founded as not only a fundraising arm, but also as an umbrella for all of the programs to fit under. Special Love runs about fourteen programs a year. Most of them for patients or patients and families, but two of them are for siblings and they're called BRASS, which stands for Brothers And SiSters. Originally, it was called Top BRASS because the idea was siblings are as important and they are Top BRASS and they deserve to be treated and loved as much as their sick brother or sister. I do remember that because I was at the first Top BRASS ever, even though I was too young. I don't know if it was you or somebody that made the exception for me to come even though I was a year too young for the camp. I'm glad we did because your family participated not only in Camp Fantastic and BRASS, but also in our family weekends. I can still picture the bright blue snowsuit that your dad wore to ski and the fluorescent stripes on it because those were all in fashion back then. You have YAC, the Young Adults with Cancer. After they are finished with Camp Fantastic, then they have that support. We found that a lot of the kids left the week of Camp Fantastic and had aged out and yet their need was just as great to be around others who understood what they were going through. YAC stands for Young Adults with Cancer and YAC Weekend is for 18 to 25-year olds. It’s not just for the kids who've been to camp and want to continue those ties but also for young adults who are new to the cancer world and they want to meet other young adults. I love what you guys do. It's life changing for everybody involved, but what I'd love to talk about is how it changed your life. Because when you were nineteen years old and you were a 4-H Camp Counselor and a college student, had you ever had any experience with children with cancer before? By the time I met the Bakers, I only had about two years of experience with kids at all. That was as much due to John Dooley even before the Bakers walked in the door. John put his faith in me that I would be able to handle kids and come out of my shell in order to let them have fun at camp. John was the first person who invested in me and that was based on simply the knowledge. He knew my parents because they both worked at Alderson Broaddus College, which is now Alderson Broaddus University in West Virginia. That's my Alma Mater. My parents and John were on the staff and faculty and so John got to know me growing up. He saw something in me in terms of my ability to have fun with kids and let my hair down. It was only because of John’s faith in me that he brought me down to the 4-H Center in Front Royal back in 1982.It was the end of that very first summer when the Bakers walked in. I wish I could tell you that by then I had already learned enough and gained enough confidence that I was able to help lead that discussion and the planning for Camp Fantastic and know that I played a real pivotal role, but the fact is, I barely remembered that conversation. I do remember thinking this is going to be a challenge, but on the other hand, what they wanted to do was create a normal childhood experience and that's what 4-H Camp did. We gave camp experiences every week for nine weeks of the summer. We didn't have to change much. We just needed to bring in the medical staffing and to make sure that our volunteer staffing was aware of what extra challenges there would be. I can relate to what it was like to do that for the very first time because when I was nineteen, it came in the door and ready or not, I had no idea what to expect. I vividly remember a line on the bottom bunk while one of my campers lay above me and his breathing was so loud from his medication had him ultra relaxed, but his breathing was so loud that I lay there terrified of what would happen if it's stopped. It's kind of a morbid story. Although he was fine, and I think he went on to survive his cancer. I was petrified that first summer and what it was going to be like to be responsible for another child's life. Little did I realize that that's what the doctors and nurses were for. I had nothing to do with the child's health, only his emotional well-being. One of the first things I try to do with new staff is to assuage their fears and assure them that you're here to provide them with fun and a normal week of camp. The doctors and the nurses will make sure they stay alive through the end of the camp, which is an exaggeration. Our kids are fine. We've never lost a child at camp. For most people, when they hear children with cancer, they automatically throw the word terminal in there half the time, which is grossly inaccurate because the national average is about 78% of the kids will survive beyond five years of their diagnosis. That doesn't mean they're not going to have long-term effects or that the chemotherapy itself might actually kill them eventually, but it's much better than what most people would realize. [Tweet “Siblings are as important and they deserve to be treated and loved as much as their sick brother or sister. @NiczTheName”] I want to touch on this and dig in a little bit because things are certainly different now than they were back in the ‘80s. Healthcare is improving, and research is improving and changing. Going back to when you started, you were a kid yourself and here are these kids who are fragile. That was great that there's the medical professionals to take care of them, but they're also dealing with things that most adults don't deal with. You're dealing also with kids that do die. That was a big marker of my life growing up is that I would make friends at Camp Fantastic. You had these kids, you had a relationship with these kids. You play with these kids, you knew these kids, you saw these kids and these families over the years. What was that like for you when you first started realizing that, “This was camp, and this was fun and now, this kid is not coming back”? How did you deal with that? Have you grown personally through that and to now 30 years later? We all see things through different lenses, but can you talk about how you were able to stand in support of the children and families with that reality? Like anybody else, you hate to lose people. At the time, like a lot of young people. I had a pretty naïve worldview when it came to not only children and life expectancy, but even my faith was pretty simplistic. It did lead to some rough days when we'd get the news that the child had passed away or even that a child was in palliative care because they couldn't treat them anymore. I'll be honest, that would be the downside. That comprises so small a portion of the day-to-day work that we do and we're not in the hospital. We're not seeing the kids when they are at their sickest. There are kids who come into camp who are considered acutely ill, but once they get into camp, they're so eager to have fun that you'd never know it. I have had people come and say, “Where are the sick kids? Because I see all these kids running around crazy, but I'm not sure where the sick kids are.” It's very easy to forget, but some of them are very ill. Camp brings out the life in them. It's very easy to forget that some of them are dealing with acute illness. I remember, during my job interview, I was a volunteer from‘83 on but they hired me in ’87,one of the questions they asked in my interview was, “What do you think will lead you away from this job? What do you see being the reason that you would leave?”It was only the second job I've ever had, and the first job was working as an admissions counselor for the college I went to so that was being paid to go to the same college. I had no work experience and I couldn't imagine, I didn't realize I was going to leave this job, but I said, “I suppose if I ever did, it would be because I lost my connection to the kids, that it didn't feel like I wasn't getting the same thing out of it that I always had.” Little did I know that ten years later, when I became a parent and had the first of three boys, that my connection to the kids didn't diminish but my connection to the parents exploded. I was drawn to the parents immediately as soon as I became a parent. Satisfaction is not the right word because sometimes it's a very tough situation, but I feel that strongly about my connection to the parents that we deal with as I do to the kids now. That means I have more passion, not less because now I'm drawn to the kids and to the parents. That was when it got harder to lose a child. It was one thing when you lost a child and you had no connection to the parents. Now that I'm so connected to the parents, on that rare occasion when we do lose a camper, I can't fathom what the parents are going through. Hopefully, I never will. On the other hand, I have met some incredibly strong parents who they got through because they had to. I've had parents say, “How do you do it?” “I didn't have a choice. You do what you have to do to get through it.” The rare funeral that I go to for a child is heart wrenching and there had been some real down days. It renews my commitment to making sure that the kids we do see continue to have a wonderful time. I alluded to the fact that your faith grown up is based on what mom or dad told you or what the preacher told you. Once you get out into the trenches with families who are going through this experience, your spirituality becomes a little more broadened because you realize that there are no easy answers to why kids get cancer or why children die of cancer. I don't think there’re supposed to be any. We're put here to connect to each other and when we see people going through such a challenging and often horrific time, the fact that we want to help and are drawn to them, that's the whole point. My spirituality, I wouldn't drive the answers, but I'm very much more at peace with why I'm here and why these families and I need each other. For me personally, my spirituality was most influenced by Camp Fantastic because from the brother’s or the sister's point of view. It's like the energy of the space and the processing and the vespers, the way that Tom led and John led and you led and the other natural leaders led and the people who'd been there and been through it, it was a safe space and an accepting space where everybody can let their guard down and show up with all their gunk. It's not a place where there's judgment. From my perspective as a kid growing up there and what I carry to this day is it was never a space I ever saw victims. I never saw, “Woe is me, this is happening to me.” Any time that that came up for people, what I registered and attempted to emulate in my own service to others was that this isn't is. How do we move through this? How do we not cope but thrive in the circumstances? How do we turn it around? We can focus on what's wrong and we get more of what's wrong or we can focus on what's right. That's what I love about Camp Fantastic and the experiences that you create is it’s a ‘what’s right’ kind of attitude. Acknowledging what is while also bringing in, “Why can't you do this? Why can't you go up in a hot air balloon? Why can't you go to camp? Why can't you ride horses? Why can't you dress up like KISS and party on?” That's one reason why people ask me if I have pet peeves. One of them is whining. I've met so many kids and families who are going through stuff that most of us would never want to go through and yet they don't complain. They knuckle down and go through it. That's something that only until you faced adversity, that you learn how to face adversity. The rest of the time you blow things up that don't deserve to be considered adversity. You're late to work because of traffic or the person in front of you in the grocery store is taking longer than they should to check out. People tend to blow that all up into these crises because they've never faced a real crisis. You meet some of these families and realized that their priorities are so much better aligned and they appreciate the time they have together because they don't take it for granted. I go home sometimes and it's hard not to get light into my kids fosar complaining about the littlest things or for taking stuff for granted because I realized that these families don't take anything for granted anymore. Some of them have faced the worst and they've still managed to find a silver lining there. Like Tom and Sheila, and it's so amazing. That story of how this came to be, I would love to link up your eulogy that you wrote with a little bit more of the back story, if that's okay? Of course. Tom's legacy, it was heartbreaking to lose him. If you look at the legacy he left, we should all be that lucky. What a legacy. You'll see it in the eulogy that if nothing else to what he contributed, he gave people the permission to be themselves and to not hold up this guard and defense in front of themselves like we’re all taught when we become teenagers and suddenly start worrying about what everyone thinks of us. He gave you permission to be your true self. At Camp, I tell the staff this is as close to most people's idea of having perfection. You're going to see while you're here because people are going to treat each other nicely because they're expected to and they're going to have permission to be themselves and not judge and not be petty. It's very enlightening to be able to do that. A lot of my audience are going to take some recognition from this. There's amazing value here for everybody. Some of the things that I regularly get complimented on is that I show up as who I am unapologetically. There's been times in my life that I've hidden and that I've shrunk down. When I come to think about the truth of life and the truth of what I know, it comes back to those teachings that Tom has instilled in everybody who's gone through any of the Special Love programs. It’s no wonder that we're all fascinated by people in power who fall because we realized they're human like we are. There's an innate magnetism of uniting with people who are imperfect because we're all imperfect. As soon as we admit that, we began to make real change and real progress. You are shifting your focus with Special Love and getting reconnected with the people. Do you want to talk about where things are going for you in your role and also where things are going with Camp Fantastic or Special Love as a whole? When you start a small nonprofit, there's usually a personal connection. The founder is connected somehow intricately with the cause. In this case, the Bakers had lost a daughter. When you start small, there's usually one employee. If you're lucky, there's two and they do everything. Everyone has to cross-train and cross-function and you become a good generalist. You're generally good at everything but you don't have the time to get good at anything. I've been with Special Love for 30 years now. They operated for five years as a volunteer organization. They hired me in ‘87 and for good or bad, they haven't figured out a way to get rid of me. It will be 31 years in April, I went from doing everything to then focusing on program and fundraising and having someone help with admin. We added a program director and a development officer. [Tweet “It’s only until you faced adversity, that you learn how to face adversity. @NiczTheName”] At that point, I wasn't sure what I was supposed to focus on. I made sure that all the fires were put out and that I was still bringing value. As organizations get larger, there's an old saying, “You always rise to the level of your own incompetence or you're promoted to the level of your own competence.”In our case, we had enough specialists that I had to get better at something. Administration was never it. I was able to generalize it, the admin function. As we've gotten bigger, I've come to the realization that my passion lies in the camp side, the family connections, the hospital connections. Going and visiting the kids in the hospital and the families and trying to build the trust in the hospital that will get them to come to camp site unseen. That's where my passion lies. This past year, which was my 30th year on the job, we did a lot of soul searching and a lot of very honest discussions on how we get to the next phase. We're over a million dollars in our budget and we've got six employees. We'd like to bring in another employee or two. I had the permission through camp to say what I felt, which was my passion is with the families and the kids and I'm not getting enough of that in a traditional CEO role. Long story short, we're in the process of hiring an executive director who can take over the admin and the policy work and the board relations, the stuff that I've done but it's always been one of many things I'm trying to juggle. This will give me more time and energy to devote to the hospital outreach. We see over a dozen different hospitals and that's very unusual for camps like us. Most of them have a partnership with one, maybe two hospitals. We have twelve and we can't keep tabs on all of them successfully. This is going to give me the time and the energy to get out there and start beating the bush and bringing more families in because we've determined that we're only serving about one in ten families who could come to camp. Part of that is because some families are never going to be convinced that camp is the place for them. For one thing, they hear camp and think of tents where we don't have tents. We’re used to doing that post camping one night, we have no tents. We have lodges with heating and air conditioning and bathrooms and it's glamping. I get to go out there and build that trust and convince people that it is worth the time. We know once a new family comes, they'll never want to stay away, or they'll come back forever if we let them because it's a community unlike any other. It's a community of kindred spirits were they not only get it, but they want to help. If they've been through the journey, the way they make that journey means something is that they come back, and they help others through that journey. It's not a coincidence that the painting which Tom Baker did and it's a silhouette of someone standing on top of a mountain helping other people up to the top of the mountain. Those were cancer survivors and families going through the struggle. I always pictured Tom as that person at the top leading them up and then the light in the background is the inspiration that we draw from those who've come before us. The fact that he included the ones who graduated that are now healthy and, in the mainstream, and that could include the kids who've passed away or who's outcome was not favorable. Either way, we're all headed toward that same inspiration and that spirit that guides us forward. There’s no greater legacy than to build a perpetuating organization that keeps helping more people and those people help more people. In a nutshell, that's what life is, but we're doing it in a very specific way. I'm going to get to spend more time doing that part of it and I'm very excited about that. After we go through something and after we see something on the other side, it's like, “Why wouldn't everybody want this?” I see what it must be like for people who don't understand what the opportunity is. I love that you're going to be spending more time at the hospitals and outreach with people at the grassroots level and the families and to build that trust and get more kids involved. From a standpoint of more kids means more finances needed. Is there also a ramp up for the fundraising? Is there any way that if anybody is listening and inspired that we can help? What are some of the needs of Special Love? I'd make a joke about not wanting your money, but that's crazy. As we grow, we're obviously going to have more need for funding, but that's something that I'll also have a hand in because I do enjoy going to major events and meeting people and thanking them. I love the human connection part. I'm not so good at the strategy and the drafting appeal letters, but I will be a part of the outreach for that to make sure that donors feel as engaged and invested and have them find a return on their investment because donors are investors who are investing in good works rather than profit. I look forward to continuing to be a part of the outreach in that respect as well. We will, as we continue to get bigger, if we build it, they will come, and we will pay for it. Special Love also provides financial support in two ways. We give young adults who have graduated from camp a chance to go pursue college degrees or other post-secondary education by providing them with grant funding. We also give families who are going through the cancer crisis money to pay for utilities or essential services so that they're not in danger of being evicted in the middle of their child's treatment. You have like an ‘adopt the camper program’, don't you? We have camp scholarships where you can sponsor a child to go to a weekend camp or we do over fourteen programs. A lot of them are weekend camps and you can sponsor campers to weekends. We've had companies that come in and sponsor the entire weekend. When we do our Octoberfest Weekend, it's a reunion for the kids who've been to the summer camps and they want to bring their parents and introduce their parents to the organization. We had groups that sponsor that entire weekend. Our website is full of opportunity to volunteer because most of our staffing is volunteer as well as helping through either spreading the word to other families or funding. You're speaking to business owners, you're speaking to people who believe in the power of positivity, not in words, but in embracing that and shifting things and also maybe interested in supporting the cause. Is there any last words of wisdom or anything you'd like to share to everyone in parting? It's more important that you invest in something beyond yourself. Your business is important, and you need your business to be successful because if it's not successful, then there won't be anything to share. Supporting charity or getting actively involved in charity is a great way to keep them connected to your human side. We do have opportunities for corporate sponsors to bring employees to camp or bring them to a special event. It's a good staff bonding experience because when you're all supposed to be doing a team building with your company, but when you're out there helping those less fortunate or those facing tough times like cancer, it does bring you together and it's a great staff bonding experience. [Tweet “It's more important that you invest in something beyond yourself. @NiczTheName”] Any responsible corporate philanthropists know that investing in your community is a great way to show your investors that you care and that you're going to be around for the long haul and you're not out for a quick buck, you're going to hit the road. It's more important that your audience or entrepreneurs everywhere are keeping a hand in the human side of things because otherwise, it's too easy to jump on that treadmill that says more money all the time. You might compare it to leaning your ladder against the wrong wall. It's one thing to climb the corporate ladder, but when you find that it's leaning against the wrong wall, then you're in trouble. Keeping your hand on the human side is a good way to make sure that the ladder is leaning the right way. Any final words about the inspiration of Camp Fantastic? Any final thoughts to leave about legacy or anything that comes up? Sometimes it may sound a little snarky to talk about letting your hair down when you're talking about kids with cancer because some of them are on chemotherapy and they have no hair, but it's a fit analogy. There’s a picture of me last year at camp with my head shaved and a group of three other counselors who had shaved their heads with me, but more importantly to my left in that photo is a little girl who has no hair because of her chemotherapy. While she was at camp, she would not take her scarf off for the first five days of camp because she was embarrassed by not having hair. It wasn't until she was helping shave my head where we wanted to show support that she leaned over and whispered to me, “When I'm finished shaving your head, can I take my scarf off so we can get a picture together?” I said, “Absolutely.” We came out with the best photograph of all of us, proud and bald. She was never happier than that moment at camp. When we talk about letting your hair down, we mean it. You may not have hair, but you may be hiding that fact or you may have come to camp with a prosthetic device, an artificial limb. It's heartwarming and the purpose of camp to see kids who take their scarves off or take that limb off and feel free to be themselves because they're not going to be judged and they discover that bald is beautiful. Almost every kid who's been there has, at some point, been bald. Most of them has grown their hair back and that, in itself is an inspiration. The kids aren't afraid to show they're bald because they know that everyone else has been there and they know that everyone else has gotten through it and they're going to get through it. Thank you so much for being here. If folks want to continue the conversation and connect, your website is? Specialove.org and our Facebook page is Specialove Camps. Our YouTube channel is Specialove Camps. Thank you so much. Thanks. What was the most valuable advice you were ever given and who shared it with you? Tom Baker, Special Love's founder, always shared a poem entitled “Risk” at the outset of every week of Camp Fantastic. It has impacted my behavior ever since. To laugh is to risk appearing a fool, To weep is to risk appearing sentimental To reach out to another is to risk involvement, To expose feelings is to risk exposing your true self To place your ideas and dreams before a crowd is to risk their loss To love is to risk not being loved in return, To hope is to risk despair, To try is to risk failure. But risks must be taken because the greatest hazard in life is to risk nothing. The person who risks nothing, does nothing, has nothing, is nothing. He may avoid suffering and sorrow, But he cannot learn, feel, change, grow or live. Chained by his servitude he is a slave who has forfeited all freedom. Only a person who risks is free. – William Arthur Ward Paying it forward, if your could speak directly to a young person who sees you as a role model and wants to follow in your footsteps, what golden nugget of wisdom would you like to pass on to them? Don't be afraid to be genuine. When you reach out to people in need, you stop worrying about whether they like you or not. Click here to read the eulogy Dave shared for Tom Baker. http://specialove.org/sl0816_round10/wp-content/uploads/2018/01/Tribute-to-Tom.pdf In recognition of Tom's irreplaceable role at Special Love, we're honored to announce the creation of the Tom Baker From-the-Heart Memorial Fund, which will make it possible for Special Love to welcome more families to our weekend programs. You can read more about the fund and make a donation at www.Specialove.org/Donate. You’ll be helping build Special Love’s weekend camps in loving memory of Tom.
- Special Love
- Camp Fantastic
- Children's Oncology Camping Association International
- 4-H Center
- YAC Weekend
- Octoberfest Weekend
- Specialove Camps – Facebook
- Specialove Camps – YouTube
About Dave SmithDave Smith is the CEO of Special Love, a Mid-Atlantic charity for children with cancer and their families. Dave has helped run Special Love's hallmark program, Camp Fantastic, for most of its 35 year existence. Camp Fantastic and all of Special Love's programs give young pediatric cancer patients and their siblings the chance to be normal kids, and their parents have the opportunity to meet and share resources with other pediatric oncology families. Dave is also the Past-President of the Children's Oncology Camping Association International and has mentored many other cancer camps. He's an avid musician and loves to interact with his campers and their families.
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