Melissa Draper: You're listening to the Do Something More podcast. And this is Episode 21 with Melissa Christensen and the Utah Kids Foundation, supporting individuals and families with special needs. Welcome to the Do Something More podcast cast, a service oriented show where we highlight the helpers who inspire us all to do something more. I'm your host, Melissa Draper. Thank you so much for being here. Okay, welcome to another episode of the podcast, and I'm looking forward to learning more about this awesome and unique foundation called the Utah Kids Foundation that serves families and children with special needs. And so we're going to learn more about it, how it got started, and some of the good things that they're doing with it. But first, I would like to welcome to the show my guest today, Melissa Christensen. Melissa, welcome to the show.

Melissa Christensen: Yes, thank you. Welcome.

Melissa Draper: Okay, I'd love to have you just start out by introducing yourself a little bit for us.

Melissa Christensen: Okay, so my name is Melissa Christensen. I am the president of Utah Kids Foundation. I am also a mom of two kids with special needs. I've got an older son who's just turned 21 who has autism and some of those cognitive disabilities. And then I have another son who is a neurotypical. And then my youngest son, he just turned 16. So he is very medically fragile and medically complex. He has a lot of different disabilities from cognitive disabilities. He is also autistic and has pretty severe ADHD, also like developmentally delayed in that respect. He's also got some neurological disabilities and he's been tested, a genetic test done that showed he has something called the Trio gene, which explains some of what he has. But there was only ten decimated cases in the world with this gene, and his variant of this gene is unknown, which means none of the other ones had his variant. So it's hard to geneticist and our neurologist and all our specialists go back and forth on whether all of his issues are explained by this genetic disorder or if it just explains part of him. But he's got a lot of, like I said, neurological issues. He has Disautonomia, which is where you don't regulate like the things in your body that are automatically regulated, like your blood pressure, your heart rate, your temperature, those kind of things. Like his doesn't work, so he doesn't regulate his temperature. His heart rate can bounce all over the place. His blood pressure can be high, sometimes drop, that kind of stuff. So that is his bigger challenges, just because it affects his day to day. He also does not have basically any GI function. So he has problems in his entire GI system. So he has swallowing difficulties. His stomach doesn't empty. He doesn't have any Motility at all through his intestines at all. So he has been on TPN, which is IV nutrition dependent, for ten and a half years, and he's doing great. He just has a lot of issues. He's got deafness in one ear, he's had eye problems. He's had lots of different issues. So he keeps me very busy, but it gives me a good perspective on several different issues that other families are also dealing with. And when he was born, he was premature, but just like five weeks premature. And we thought some of the issues that he had from the beginning were just premie issues. And it became apparent pretty quick that he was still delayed. And they just said, oh, it's premie, premie. But about when he was 18 months, it became pretty clear that you couldn't explain it by that. And he was a poor eater and he didn't eat well, and so he ended up with the feeding tube that was put in right before he turned two. And when that happened, I had never known a person with the feeding tube. I've never physically seen a feeding tube. I was completely lost and navigating that with the hospital, had classes up, down at primary children's that you could take that kind of taught you how to take care of it and that kind of stuff, which we took. But you go to the hospital, you have the surgery, you go home, and there was nothing. Just little things that would come up and how to secure things down and that kind of stuff. There just wasn't any information out there. And so now, looking back, I don't ever want any family to go through that and how hard it is just to have that situation. Just in general, to have a child who needs support and who needs extra things and has different problems going on is hard. But to not have a support system or have somebody that you can ask questions to is really overwhelming.

Melissa Draper: Yeah.

Melissa Christensen: And so that has been so important to me, is having that ability and that capability in our community to provide that.

Melissa Draper: Yeah.

Melissa Christensen: And that's what Utah Kids does.

Melissa Draper: Right? You've been a mom in the trenches doing this for a long time.

Melissa Christensen: Yeah. So I understand when moms are overwhelmed and when they're posting questions and emergency issues, that kind of stuff that's posted in our support group on Facebook. I, as well as other board members that are on our board for Utah Kids, we all are special needs moms. And so we understand what's going through their life. We understand what challenges that they're facing. And it's so nice to be able to help a brand new not brand new mom, necessarily, but a mom bringing home a brand new issue home from a hospital that we can step in and we can help them and we can bridge that. Because there really is such a disconnect from being discharged from the hospital with a kid who needs whatever it may be. They make it sound in the hospital, they're like, oh, we have home health. You'll have home health care to come in. They'll help you. But honestly they don't live the life either. They don't deal with kids and people day to day to day. They can tell you okay, this is what you need to do, but can they tell you how to secure down a tube so your crawling baby doesn't pull it out? That kind of stuff. And so that's where we are here to step in and help. And we have just under 6000 families that are in our support forum alone.

Melissa Draper: Wow.

Melissa Christensen: And we're very broad. So we're very unique in that we don't center towards one specific disability. There's a lot of Facebook groups out there and there's a lot of support groups that are for a diagnosis know, such as a down syndrome support group. There is a lot of autism support groups but we are all encompassing. So in our support forum we have families who have kids with autism, maybe higher functioning autism ADHD all the way down to kiddos with total care. And so our criteria for joining our group is basically do you have a.

Melissa Draper: Child with special are you navigating that with special needs?

Melissa Christensen: Yeah, exactly.

Melissa Draper: Great.

Melissa Christensen: And that's it. But the amazing thing about that is that with the amount of families we have is even families who have more unique circumstances that aren't more of the normal, there's always somebody else that can help. There's always somebody who knows and can help with that situation.

Melissa Draper: Definitely power in that community.

Melissa Christensen: Exactly. And so it's just amazing to watch as we just watch the day to day going on in our Facebook group. It doesn't matter what the question is and what the problem is, somebody knows an answer or knows a resource to say hey, you should call this group or you should call and do this or whatever. So we're really unique in that because we don't specify specific disorders and that kind of stuff, that we can be a more broad support group.

Melissa Draper: Yeah, well, that is great to build that sense of community. I think that is something that definitely any mother appreciates, but especially one that's navigating some of those overwhelming feelings and challenges. But I would just love to go back a little bit. So it seems that it was your children that really motivated you wanting to start this foundation and how did you go about that and being able to navigate that while also taking care of the needs of your family as well.

Melissa Christensen: Okay, so actually Utah kids started as just a Facebook group.

Melissa Draper: Okay, that was your very first thing was the support group.

Melissa Christensen: Yeah, but I didn't start it, it was started by somebody else. I just joined it when we only had just over 100 people in it long, long time ago. It started as just a Facebook group and then in 2015 is when the nonprofit we got the 501 C three status and got all that taken care of in the end of 2015 14 sorry, 2014. And the reason for going from just a support group for families is that we do the biggest part of what we do, actually, is medical supplies. And so in order to do that legally, and to do that the way it needs to be done, we had to become a nonprofit. And so that happened, and I was involved as a secretary, started as a parent advocate, and then moved into a secretary position. And then I became president in 2018.

Melissa Draper: Wow.

Melissa Christensen: In 2020, we had to make some changes, and we no longer had our executive director who played a part in creating Utah kids. And so we kind of did a rebranding, kind of, and a refocus on what we truly wanted to do and where we wanted our foundation to go. And I'd been president for two years, but I wasn't really able to do a lot until we made those changes. And our executive director is no longer with us. And then we don't have an executive director, we just have a president now. And that's when it kind of took off, and we've made some significant changes, and we've grown so much since then.

Melissa Draper: Wow.

Melissa Christensen: So I've been involved from a long, long time. I haven't been in charge, completely in charge by myself until 2020. It was actually the week COVID shutdown everything that I took that on. And it was a hard time. It was like the timing was really difficult to do that. But here we are three years later, and it's amazing how far we've came in just three years. Yeah.

Melissa Draper: That was a daunting time, I think, for many nonprofits.

Melissa Christensen: Figure out, well, yes.

Melissa Draper: Serve the communities that you want to serve.

Melissa Christensen: Yeah. Well, see, our problem wasn't so much we didn't really stop doing what we do. That part didn't really affect us. It was the grants, all grants shut down. Funding was the biggest issue. So that's what made it really tricky, is if there was a way to have not done it right when COVID shut everything down, obviously we probably wouldn't have done that, but that's how it worked out and it's good now. And I'm really glad that it happened and we did it and didn't wait around to be, well, let's see what COVID does. I know, right? Exactly.

Melissa Draper: Well, that's great. Well, yes. So I would love to hear about I know you have kind of different areas that you choose to meet those needs of special needs families. So you talk first about you have this Facebook forum for anyone that has a child with special needs.

Melissa Christensen: Yes. And our criteria for joining the support forum, just because we want to keep it a safe place for parents to be able to talk again, you have to have a child with special needs. And like I said, we're broad just special needs is all. And you have to either live in Utah or see doctors in Utah. So most of our members are here in Utah, but we do have several, probably I would say close to 100 families that we help and that are active that are outside of Utah because they come to primaries for services.

Melissa Draper: Right.

Melissa Christensen: So we have a couple from Montana, Wyoming, Colorado, Nevada, kind of that area. Yeah, exactly.

Melissa Draper: That Facebook group sounds like a great way to build that sense of community and give parents a place to go with other parents that understand some of those challenges.

Melissa Christensen: We have had several families that have moved from Utah and we give them a grace period. We give them about six months before we're like, okay, you probably need to leave the group because you're not here anymore and you're not using our services.

Melissa Draper: Right.

Melissa Christensen: I mean, every single one of them just say, I wish that wherever they're living had something like Utah kids. There's nothing like that here. And as far as I know, just because I've been in the special needs world for quite a while and on Facebook and I am in other different specific groups that are for special needs, but I've never found anything even close to what we do anywhere else. I wish that there's other people outside of Utah that could kind of take our model and the way that we're doing things and be able to do that. Because in Utah we see what Anita is and it's daily struggle and just I have personal friends who are not in Utah anymore and don't have that support anymore and it's hard.

Melissa Draper: Yeah, it's definitely good and unique service that you're performing with.

Melissa Christensen: Yes.

Melissa Draper: And then you talked a little bit about the other part of your foundation is helping with medical supplies. So do you want to just expound on that for a little bit?

Melissa Christensen: Yeah, so what we do is we take unused medical supplies. So whether that be a family who has too much of the formula for their child and don't want to store it, or just extra medical supplies, all the things that come with feeding tubes and those such things. And that's kind of how we started is we would take those extra supplies and then we would get it back out to other families who needed them. Either insurance is not giving them what they need or they don't have insurance or it's emergency situation. I went to the doctor, my doctor decided that my child needs to change to this formula today, but the medical supply company is not going be to able to get me that for three or four days. And that's where we step in and we're like, okay, we have this formula and then we can get it to them. And so that's how it started and how things were going. We're at a place now that all of the healthcare companies in Utah know to give them our phone number to any patients who call and have supplies that they want to return because a lot of people think, you know, I needed the supply, but I don't need it anymore, I'm done with my treatment. I can just call IC or CVS or any of these nursing companies and say, hey, can you come get this and find out that they can't return once it's come to your house, you can never return anything. And so then they're sitting on supplies. And so all of the companies give them our number and tell them to call us to donate. So we're getting a lot of supplies in that way now. And so we're no longer just getting things from the special needs families that have just children, which is where we started from, was we were based around kids more. And yes, that's still like our main purpose, but we have expanded out over the last two, three years and we're helping numerous elderly people and different people in different situations. So we've kind of expanded upon just kids. And now our focus is anybody with a disability so we can help any person that it's taking care of another person that has a disability.

Melissa Draper: Wow.

Melissa Christensen: So in doing that, we have a lot of elderly people that we are helping. Some of them just need prices of everything have gone up and they can't afford incontinent supplies. And that's where Utah Kids has been able to step in because we have so many incontinent supplies donated to us that we have every size and tons of it, so we can give somebody two or three months worth of incontinent supplies. And so there's a lot of elderly people that are on fixed incomes that we realized what a need that they also had. Because you're not a child anymore doesn't mean you don't need the help. And so we have expanded upon that. And so in doing that, we have a lot more abroad area, I should say, of supplies coming in. The word has been spreading. It's so funny sometimes that how it's like we're like the biggest thing that nobody knows about the amount of stuff we do and that we get out to the community. We just finished our tax year for this last year and we were able to get out $566,000 worth of supplies to the community, of medical supplies. And so we're growing and we're bigger, but we're trying to get the word out because there's so many other families that we know still could need us and could use the help. Yeah, and so that's kind of where we're at right now, is trying to figure out how to reach those people and how to make sure that they know that there is an option to get supplies.

Melissa Draper: I love that unique idea too, of using what someone has that they're not going to use, just taking those extras and donating them forward too. I've thought of that with other things like food or other needs, but I never thought of that with medical supplies. That's such a great model.

Melissa Christensen: It gets thrown away. I mean, that's just what happens. We help a lot of elderly cancer patients. It's so common when going through cancer that they have a feeding to put in and are on formula through that for their nutrition purposes while they're going through treatments, and they always have extra. And it was crazy when we first started partnering with all of these different companies to find out how many, when they would call to say, this is what we do or this is what we need, that they were just told to throw everything away. And it's expensive stuff, especially the cancer patients. My heart goes out to them because I just got a call a couple of days ago from an older lady that is donating stuff because she just got off her feeding tube from cancer treatment. She's cancer free, but she paid for the supplies out of her own pocket because her insurance wouldn't cover them. And so she's like, I can't just throw away this stuff. She's like, I paid $500 for this stuff and I don't want to throw it away. And they told me that I could donate it to you. And so we're hoping to try to be making a dent in the fact that a lot of people are just tossing their medical supplies because it is needed. There is somebody else that needs it, and we're here to connect that to be the in between. You give it to us, we know who needs it.

Melissa Draper: Right?

Melissa Christensen: We get it back.

Melissa Draper: Yeah, that's great. Do you have any unique stories or other experiences that you've seen of how it's personally affected families that you've worked with or assisted?

Melissa Christensen: I can tell you that I know of four families over the last little while that literally would have lost their homes because of the cost of medical supplies that they were needing to keep their child alive. And insurance either wasn't covering them or they have like a high deductible. And so we stepped in and said, no, we will supply all of the things that you need. We have the formula, we have all the formula goes in feeding bags and then a pump pumps it in. And we don't have the pump, but we have all of the other things that insurance is going to continue to bill you for every month. And we've been able to save four people from going into complete foreclosure and losing their homes because they no longer had to spend twelve to $1,400 a month on feeding tube and formula and stuff like that to keep their child alive. Nobody should have to be in that situation. And it's so good to know that we made a difference there. Sometimes we don't know all the little stories and the situations that families are going through when they ask us for help because we don't ask questions. If you need help, you need help, we give it, no questions asked. And it was nice to hear something of what we do because we don't often hear the impact that we're having because a lot of families are not going to want to talk about their financial situation and how bad things are. And we've gotten pretty good at learning who truly needs the help and is in a really bad situation as opposed to somebody who still needs the help. But it's not quite as a dire situation. You just can tell as we've been doing this, you can just tell those families that absolutely need it and they don't complain, they don't want to talk about it.

Melissa Draper: What a beautiful service. Because I can't imagine as a mother trying to navigate a diagnosis like that, trying to help and assist your child and then on top of that, the financial stresses and worries that can come as well.

Melissa Christensen: Exactly, yes, it is overwhelming just to live the life of a special needs parent, just to the day to day things that you have to do to keep your child alive, basically. And then you add the financial aspect on it and it is tremendous. And so many families just keep that to themselves. They don't talk about that and it is heartbreaking and it is really good that in some small part we can make a difference and we can help them. There's a lot of things we can't do and the fact that this is something that we can do and that it does make a difference for these families. They're deciding do I pay my electricity bill or do I get the formula that my child needs to live? Because they don't eat anything by mouth. It is really a humbling experience to be in a position where you can say no, you do what you need to do, we got you, we'll get you all the things you need, we have plenty and we will continue to help you. We help some families, it's just once or sporadic, but we have a few families that we literally give them their supplies every single month because they're just not in a good position where they can make a change in their life. So they don't need the help quickly. If they need it, they need it. And we don't ask questions. There's no criteria like oh, we have to have proof of income, we don't do anything like that. It's really like an honor system basically is able to start helping a lot of undocumented families. They're so incredibly um we have one guy who goes to her name is Kim, he shows up at her house, he doesn't speak English and he has just a list. And thankfully her house is a big area for people to drop supplies off to. So she generally has a lot of things just on hand. In our Utah kids van that we use to transport supplies and it's several families that he's coming to get medical supplies for, and he doesn't want to tell us names or anything because generally we keep track of names simply because we need to keep track of what we're doing, what kind of stuff, how many you're helping. Yeah, but with him, it's just we don't ask questions. Clearly they're worried and that's okay. Yeah, that's not what we're here for.

Melissa Draper: Something unique your organization can offer?

Melissa Christensen: Yes, that's the thing that we're really working on getting out into that doesn't speak English, to be able to make sure that they know that the help is there and that we're not going to ask questions. We're not giving your name out to people. We just want to help you and give you what you need. And we get a lot of people that come from other countries to primaries for transplants. So the transplant clinic, we help a lot of patients that come from out of the country because they come here to have an organ transplant, and they go in the hospital, and while they're at the hospital, everything they need is provided for them. But then they're discharged for the hospital, and they stay here sometimes up to six months before they can go back to their country, and they don't have supplies provided for them. So the transplant clinic have become pretty good friends with us, and we help step in and help with formula and feeding tube supplies and those kind of things for these patients because they're here from out of the country. And once you're discharged, the hospital no longer can give you supplies.

Melissa Draper: Wow. Well, it sounds like you've been able to just fulfill so many of your own little unique places in the community where those needs are real. And I want to go back to how you mentioned what it's like being the parent of a special needs child. And I just think for those of us that maybe don't have as much idea of what that's like, but we've wanted to serve or support children or families in that situation. Do you have any advice or encouragement you would give to anyone that's wanting to offer that kind of support to a family with special needs children?

Melissa Christensen: Our biggest thing probably would be just getting the word out, just saying, hey, I heard about this know, Utah Kids Foundation. You can just Google it and our website will pop up and they look and look on our website and contact us that way because that's where it's hard for us is to get the word out that we're here. And it's slowly getting better and better, and we're getting more and more people that have heard of us. But still, we just need that word of mouth. And even if you don't know anything about what we do, technically, if anybody can just say, hey, I heard about this organization that helps people with special needs, and if they can get to our website from there, we can get things figured out for them. But that's kind of our biggest thing. Our other thing that we rely on the community for is so we do a program that we call Stuff The Stocking, which is like a sub for Santa. So we provide Christmas for our families that are in our foundation, those families that obviously, due to the circumstances, a lot of them don't have extra money for Christmas. And so that's where we step in. And this last year, we did Christmas for just under 300 kids. 292, I think is what the total number was, with a total of 100 and something families. And we just step in and we rely on sponsors, people that want to sponsor, people that want to just drop off a toy or two. We start advertising. It's going to go on our Facebook page. So we have two Facebook pages. We have one that's the parent forum that you have to ask to join. But we also have just a Facebook group that's for our foundation. So we have information on there. We also have information on our website, Instagram. All the social media stuff will start popping up in October. And that's a really good way for people to help or to just spread the word. If somebody is looking for something to do, that's our biggest time of year that we need the help is to provide Christmas for these families.

Melissa Draper: Right. Well, I will include links to all of those in the show notes for anyone that wants to look into that, more of what your foundation does and assist with those things. So thank you for sharing those. Well, Melissa, I have loved learning about the Utah Kids Foundation and all those good things you're doing. Any final thoughts or words you want to share on why this matters to you or encouragement to anyone that's navigating those challenges?

Melissa Christensen: I think I just want everybody to know that there is support out there and you are not alone. I also understand personally how alone you can feel and how hard it can be. And I don't want people to feel alone. We want everybody to have that sense of community and that sense of somewhere that you belong. Because a lot of us I went through this when my son was younger, before Utah had started, is just not having a place to belong. You're not like your friends. When you have a child with disabilities, you're not like everybody else. And so having that place where you feel like I have people that get me, I have people that understand that is so important. And we want to get that out, and we want to get out that. If you need medical supplies, we want to help you. We have a warehouse full of supplies in South Lake, and we have a way to get it everywhere across the you know, that's kind of how we work. We have our warehouse and then it goes. To different locations everywhere from Logan clear down south, and you just pick where is closest to you, and then the supplies will get moved there, and then they can go pick them up there. And so we have a lot of people behind me. I have a board, but we also have moderators. We call moderators and drop locations that everybody things come to their house and drop their supplies are donated and dropped off or picked up. And everybody our board and our drop locations, we're all volunteers. Nobody gets paid in our organization at all. And so we're all volunteers and we're all here to help. We're all here because we want to be here. We're here because we have kids that are special needs, and so we understand and we want to help as many people as we can get to.

Melissa Draper: Yeah, it's a great mission and a great message. And I think that every parent or individual navigating those things needs to hear that they're not alone. And I just love hearing Melissa as well, how you've taken those things that you had to navigate as a mother and are now using them to help other people and families is.

Melissa Christensen: A it's an amazing thing.

Melissa Draper: Yeah, really. Well, thank you so much for coming on the show today and sharing all about it.

Melissa Christensen: Yes, I appreciate it. Thank you for letting me because we want to get the word out to everybody that we can.

Melissa Draper: That concludes my interview with Melissa Christensen. And as I was conducting that interview with her, I just kept thinking how she has such a big heart. I'm so impressed after hearing all she's learned how to do and navigate herself as a mother with special needs children, to now take that knowledge and experience and now spend a lot of her time providing help and support to other families and individuals that are navigating that experience of having children with special needs. So if you know someone or a family that's in this same situation, please share this episode with them. I think they could gain a lot by just hearing Melissa's encouraging words and also learning and knowing about some of the resources that are available to them, either financially with the work they do by helping people with medical supplies, or also just finding a community and a place to find encouragement and support. In the Facebook group that she mentioned, And I just think it's amazing work they're doing to help people in need with medical supplies. That idea of taking extras and surplus and instead of throwing it away, finding a system that you can use it to help others in need, such a great model and I think a great role that they're helping with and fulfilling in the community. So if you were inspired while listening to this podcast and you want to learn more about the Utah Kids Foundation or how you can assist or contribute to them, I will leave links to their website and their social media pages in the podcast notes and you can go and learn more about them. Or if you want to donate some medical supplies that you have on hand, can find that information as well. So was an firing interview. I hope you enjoyed listening to it. I know I got a lot out of it as well, so thank you so much for being here. I'll see you next time.