EPISODE 7 – Sara Knight

The Sweet Julia Grace Foundation was started in honor of my daughter Julia Grace who passed away in 2013 from a really rare genetic disease called I-Cell. Most people have never heard of it. She spent her life going through a lot, but she never quit spreading her joy and giving love and changing the world around her. Her favorite quote – we always called it her life quote – was, “Life isn’t about waiting for the storms to pass. It’s learning to dance in the rain.” So, the foundation that I started in honor of her is actually so that I can come alongside other families who have children just like Julia and help them dance in the rain. Our mission is to help grant wishes, meet non-medical needs, and fill in the gaps for families who have children with special needs or going through a medical crisis, and we do anything we can to come alongside families. So, we’ve done everything from building ramps for children, building handicapped-accessible bathrooms, sending kids on dream trips like to New York. We’ve arranged celebrity meet-and-greets. We do birthday parties. We do room makeovers. Really, anything that we can do to support the family and bring some joy into their life. When we started the foundation in 2014, my goal was to eventually be able to come back to West Virginia and do what we do in Virginia here in my hometown. We’re so happy to be able to support families like Westin’s and Davis’s. Weston really enjoys being outside with his family, and when we spoke with his mom, we realized that they didn’t really have a place to bring him outside. So, our goal was to give Weston a place that he could sit outside and swing with his family, so they could enjoy some time together. I can’t even begin to express how much gratefulness is in our hearts. How much easier this is going to make memories being made with Weston on the back porch in the swing. It’s something that we can’t even begin to – we could have never imagined how it would have turned out. Already today, he’s been out here swinging. And the ease of getting him back here – it’s just meant I can do it on my own now. I don’t have to have somebody helping me. My heart is so full of joy, and now I want to take that joy and pass it on to others. Where we were not allowed to work on this project, we want to help Sweet Julia Grace Foundation so they can experience the joy that we’re feeling today. In order for us to help Raindancer families here in West Virginia, we need your help. There’s so many ways you can get involved. Your business can partner with us and donate your services and your skills. Whatever you do as a company or a business, we can find a place for you. You and your family can get involved by volunteering. Hopefully, by the end of this year or the beginning of next year, we’ll have our first fundraiser. And, we’d love for you all to come out and join us for that, but in the meantime, if you’d like to make a donation, a hundred percent of the funds that we raise here in West Virginia will stay here in West Virginia and help local children who are in the midst of the storm dance in the rain.

BG Hamrick: Hi everybody, and welcome to the Local Impact Podcast. I’m BG Hamrick. With me today is Whitney Barnhart, and we’re very happy to be with you today to talk about a very special foundation. I’m really looking forward to talking with Sara today. Sara is our guest and let me just start by saying Sara, welcome to the Local Impact Podcast. It’s great to have you.

Sara Knight: I’m honored to be here.

BG Hamrick: Great. Let me just read a little bit about Sara and about the foundation, and I’ll kind of set the stage for what we’re going to talk about today. What we’re going to speak about is a foundation called The Sweet Julia Grace Foundation, and it’s based in Bristowe, Virginia. It is a 501(c)3 nonprofit organization, but it’s inspired by, and it’s in honor of Julia Grace, who passed away in 2013 from complications related to a rare disease called I-Cell. Julia was 12 years old, and she has inspired, and her life has inspired everyone who knew her or read about her or loved her. And, it’s just so great to have Sara, the mother of Julia Grace, with us today on the podcast to talk about the foundation and to talk about what it is they do to make an impact in people’s lives. 

The bio on the website speaks about “despite the storms that she faced, Julia knew how to,” a great quote, “dance in the rain. She lived in the moment, made life sweet, and filled hearts with joy just by being her.” And, so we’re going to honor her today. We’re going to honor Sara and her foundation today by bringing some really inspiring and encouraging news to you today about what this foundation does and how it makes a difference and a real impact.

Our podcast is all about just that. We want to reach out to community organizations, people, events, anything that makes a real, true change in our community for the good. That’s what we want to highlight here on the Local Impact Podcast, and there’s no difference today. So, Sara, again, thanks for being here, and if you could just start by letting us get to know you a little bit, maybe. Tell us about your story, how you got to the foundation, how that all got started. Give us just a peek inside Sara’s life.

Sara Knight: Sure. Actually, I grew up in West Virginia. I was born in Braxton County, and my family and I moved to Hurricane in 1990, so I graduated from Hurricane High School – went to Marshall. My husband and I got married after college, and we ended up moving to Virginia in 2002. So, we have a son who’s 23. His name’s Cameron, and Julia Grace who passed away in 2013, like you were saying. Julia, when she was born and she was diagnosed with I-cell, we were told by the doctors that she would probably only live to like three or four years old because her disease was progressive. And she ended up living until she was 12. So, we feel like we were just very blessed with a lot of extra years with her. But, she had to go through a lot to stay here, and the disease that she had was progressive, and it caused – it affected her entire body. So she went through a lot. But, even when she went through a lot, and even when she was suffering, she still smiled, and she still loved everybody around her. She still bossed us around and told us what she wanted, and , she was just – She really inspired us to realize that you don’t really have to wait for things to get better. You can still just enjoy life and be in the moment, and love people that you have in your life no matter what you’re going through. And, so, that’s why we always said that her life quote was, “Life isn’t about waiting for the storms to pass. It’s learning to dance in the rain.” And, when she was here, we always said that she knew how to dance in the rain no matter what storm she was facing. It really inspired us to try to rise up and do the same. We were going through what she was going through with her. So, when she passed away in 2013, and I decided to start a foundation in honor of her, it kind of came to me in a very inspiring way. I hadn’t – I knew nothing about starting a non-profit. My background is marketing and raising kids, and that was it. So, I really didn’t know what I would do with myself when she was gone because I missed her so much. And our family missed her so much. I really didn’t know what my next phase of life would look like, and people kept saying, “Are you going to start a foundation for her?” “No, no. I’m not going to do that. I don’t know.” And, we had money that was given to us in her honor for her memorial fund. So we were trying to decide what to do with that to honor her. One night I was just kind of laying there talking to God and said, “You’re going to have to give me the inspiration to do this because I got nothing. , I don’t have the energy or strength to do anything right now.” Because I was in the – I was grieving. It was only months after she had passed, and all of a sudden, it just came to me: The Sweet Julia Grace Foundation – Helping Children Dance in the Rain. And I was like, “Oh, yes. Okay. I have the inspiration; we’re going to do this. Okay. What does it look like? How do you keep this? Okay, what do you do now?” So, I was very overwhelmed, but I had the vision and the inspiration to do it. That’s all I needed for that phase, and I just started taking the first steps and created a 501(c)3 with the help of some very close friends., started kind of creating our mission, started helping our first kids. This was all like months after Julia had passed away, so we helped our first child the first Christmas after Julia had passed. That Christmas, I was like, “How am I going to survive the first Christmas without her?” And, God sent us a family to help. We really moved into helping that family and got the community involved. We had their entire Christmas taken care of, and Santa came to get pictures with the little girl who had special needs and couldn’t go out to see Santa. We had a yard full of carolers come at the end of it to surprise the family. So, I was like, “Okay, this is… I think this is what we’re doing.” So, that was the first experience we had in doing something in her honor. I had no idea what it would become. I just took a step at a time with all the people that God put in my life to support me, and help me, and encourage me, and we became an official 501(c)3 in 2014. In the beginning, we were just focusing on families in our area. Our mission is to help children in the midst of a storm dance in the rain but to be more technical about it, it’s children who have special needs, are going through a medical crisis, are seriously ill. We grant wishes and help their families with non-medical needs that they might have – day-to-day needs that they might have. But, we also connect the community to what other resources we can find. We connect them with those families to help them however we can. We call all the kids we help Raindancers which is helping children dance in the rain. We call them Raindancers. That’s why you see yellow umbrellas everywhere on our website, and it’s our logo. It’s a yellow umbrella. The kids we help we call Raindancers. Their families are Raindancers because the families that are walking alongside them with brothers and sisters and moms and dads, they’re going through it, too. They’re in a storm, too. So, we do whatever we can to come alongside Raindancer families and bring joy and just help however we can.

BG Hamrick: I love that story, love that story. And that is so inspirational. This is – I want to dig deeper, of course, into the programs that you, but I’m very curious. I hear a lot of stories like yours where someone goes through great tragedy in their life, and great struggle and out of that comes something just amazing. And they’re able to create a beautiful life of giving, and healing and all of that. Can I dig a little deeper? How did that help you to establish this foundation? To start to see those things happen in other families lives that you were a part of, how did that help heal you personally and get you from the stage of grieving to the stage of giving back and feeling like you’re really honoring Julia Grace in all that you do?

Sara Knight: I mean, I think there’s a few layers of truth to it, and the surface layer is that it’s a good distraction. Right? So like when you are in so much pain because of the grief of losing somebody like a child, a good distraction it’s good. That’s not why most people do this, of course, but that’s kind of one of those things you don’t expect that comes with it . You’re distracted by helping others, and then it takes your mind off of your own pain. But I think the deeper truth, and for me, is that it’s my purpose . I was blessed to have a little girl that changed my life. I have to fulfill the purpose now that she left me and that God’s given me. Which is to not just honor her, but to take the compassion and understanding that I have and allow that to go towards another. Because whatever you go through, you can develop certain muscles within yourself because of what you go through. Like if you’re a drug addict and you’ve recovered, you can help people who are now drug addicts and have compassion for them. Because you don’t know what you don’t know until it. So for me, I had a very medically fragile little girl, and I spent 12 years keeping her alive in a sense. Because of how medically fragile she was. I was her full-time caregiver and mom, so I know what it’s like for these families to spend every waking and sleeping hour worrying about their child at a level that people just – you don’t know unless . And I don’t want anybody to know. For me, I had always known within my heart, when Julia was here, that I wanted a vehicle to get into the lives of other families who were going through a storm with their child. Because I knew god had given me certain things to give them. I had no idea when I wanted that it would be a foundation that God created – helped me create – to do that with.I had no idea it would be a foundation. I thought it would be like oh I’d get to meet people, and I could tell them what I learned and how I could help them and give them support and let them know I understand. But, instead I’m able to send them on trips, and pay their mortgage, and things that I never dreamed we’d be able to do because of the support we’ve been given. So, it does probably play into healing in a sense, but I would say the truth of it is it distracts you from the pain and then you have to do your own work through the healing. But, I also do believe that some people are given a purpose to take what they’ve been through and use it to give to others.

BG Hamrick: Yeah.That’s a great perspective, and I’m glad you brought that up because that’s sort of what I was was alluding to is that even any of us who go through any rough time – in a rough patch in our lives and obviously many of us will never experience the level of pain that your family went through, but there’s always a hope. There’s always a silver lining. There’s always – how you describe – a purpose. There’s something you can turn around and you can make a difference in the community. And thank you. That just brings hope to any of us who go through, , what we think are tough times. days that are struggles for us in comparison. Sometimes we don’t really have many problems, but it is certainly a big – there are big problems for people in their lives where they are, and they’re struggling. I just hope they can hear your message today. That there’s hope, and there’s healing, and the ability to return again to life, and to find your direction. So, thanks for sharing that. I know Whitney wants to jump into the programs a bit so, I’ll let her do that next.

If you’re just tuning in, you’re listening to the Local Impact Podcast and our guest today is Sara. She is the founder of The Sweet Julia Grace Foundation.

Whitney Barnhart: Yeah, Sara thank you again so much for being here, and thank you for sharing that story. That was just absolutely so beautiful and so touching. And you mentioned while you were talking about it the Raindancers which are all of the lovely little kids that you guys get to help, but also tell me a little bit about your iPad program. I saw that on your website. What is that all about?

Sara Knight: Sure, so we have lots of different programs for the kids and one of them is the iPad program. And the reason we started the iPad program is because I feel very strongly that kids that are going through a medical crisis need an iPad, and not every family has one. And so when they’re in the hospital for weeks or one week, or they’re driving back and forth to appointments, or to other states for appointments, or they have to go get shots and all kinds of things that they have to deal with on their normal basis, we want to make sure every single one of them have an iPad. So if they don’t already have an iPad when they come to us, that’s one thing that we get them. We get them an iPad, and cute little backpack to carry it in, and headphones, and nice little case, so they’re all set for whatever they’ve got going on.

Whitney Barnhart: That’s awesome. I love that, and you also have a Rainy Day program. Can you let us in a little bit on that?

Sara Knight: Yes. So the rainy day rainy day program has evolved a little bit because of COVID, and it’s becoming more of a… It’s a very dynamic program now because of what we went through last year. Because last year, we had a lot of families who… Well, I should back up for a second.

So, once a family comes to us and qualifies as a Raindancer, they are basically brought into our family. And a Raindancer family, for as long as they need us, we help them however we can. And that makes us very different from other organizations that might be able to grant wishes or do something but then they’re done. It’s like okay here’s your gift, good luck, ? And we’re not like that. We’re more like you’re stuck with us now. So once we meet a family, and we do whatever we need to do for them, or they wish – they want whatever wishes they have for their child, they become a part of our Raindancer family. If down the road they run into other problems or issues because of their child’s diagnosis, we can help them again. So say we bought a little boy an iPad a year ago, and he’s still in treatment or he’s not doing well and his dad had to quit working so that he can drive to his appointments every day. We’ll help them with their mortgage that month. We’ll help them with their utilities, or give them some gas cards, or help them with groceries. Whatever we can to kind of help them during that rainy day. So it kind of goes with our theme of course. But we always hear, “you have to save up for a rainy day.” Well, these families are – they’re in that rainy day that we all save up for. And usually whatever they’ve saved up for that rainy day is gone within the first year of their child’s diagnosis. So we just try to support them how we can and kind of fill in that gap of that rainy day fund that they might need help with for a short-term basis. 

Whitney Barnhart: That’s amazing. So The Sweet Julia Grace Foundation is all about relationships is what I’m getting. It’s not a one and done type of situation. You are holding their hand until

Sara Knight: yeah 

Whitney Barnhart: until they can stand on their own two feet again. 

Sara Knight: Yeah. And actually, a side note which I don’t know if we kind of really got into it yet, but West Virginia obviously is near and dear to me. I mean it’s – I feel like my heart is in two different states. I mean where I lived in West Virginia where my family still is. We have a family cabin in Pocahontas County which is where Julia’s buried, and so the first chapter we ever began is in Hurricane. And my parents basically are my helpers in the Hurricane area, so any families within the close Hurricane area – within like a 20-30 minute radius – we will support. But we also have helped a few families in Braxton County where I was born and then a few different places in West Virginia as well. So we’re very much about the local families here where we live plus West Virginia. I like, “I’m gonna take care of my West Virginia families, too!” So, yeah, we’ve been so fortunate to be able to have the support of our community with great fundraisers and partners and donors, so it allows us to do really great things for families here but also in West Virginia. But yes we are. 

I think it’s so important to create community for these families because if a child has special needs and it’s a long-term diagnosis with lots of things going on throughout their life, then a lot of times families will connect and kind of develop relationships with each other. But most of the time when a family is thrown into a crisis with their child because of a diagnosis, they feel like they’re on an island, like nobody really understands what they’re going through. Even people who love them don’t understand what they’re going through, so we immediately connect all of our families. We have a private facebook page for our families to let them get connected, and we have Christmas parties for our families – pre-COVID times which we’ll start again. We have fall festivals for our families, and these are like parties and celebrations just for our families – our Raindancer families. Whether they’re current families were helping or somebody we helped five years ago because they’re part of our family now. And we do whatever we can to let them create relationships within their own families, too. We get the moms together on a regular basis for spa day, or to take them out to a winery, or whatever we can do to create community, develop relationships, and make sure they feel like, “I’m not alone.” Whether that’s two people or 20 in a group, that’s what we do.

BG Hamrick: That’s so cool. It’s so non-corporate, non-organization. It’s more people to people, and I love that.

Whitney Barnhart: Yeah that is really incredible; I love that. So you also have a program designed around the Pediatric ICU, is that correct?

Sara Knight: Yes, so that’s actually really developed a lot since COVID, so we don’t focus just on the Pediatric ICU. We actually have a partnership with four local hospitals, and our focus there is to provide parent care packages to the parents who are in-patient with their child.

So, a lot of times parents show up in an ER with their child because they’re not doing well or they’re super sick with the clothes on their back. All they care about is their child and taking care of that child, and so what we do is we provide these care packages so that these children’s units can hand them over to their parents and say, “Hey here’s some snacks. Here’s some deodorant. Here’s a hairbrush. Here’s some hair ties. Here’s some face wipes. This is for you.”Because most units do not have provisions for parents. Their focus is the child, and so these parent care packages have basically everything a parent might need to get them through the first few days of being thrown into a crisis with their child.

Whitney Barnhart: That’s amazing. Are those hospitals all there in northern Virginia?

Sara Knight: Yes. We have partnerships with three hospitals here and another organization here, but I would love to start this at the Charleston pediatric units, too, because we have a lot of our Raindancer families who pass through those doors a lot. And I know that the need is there as well. So I totally foresee that being a program we start probably this year or next – a solid partnership with one of those hospitals who’d like to start receiving our care packages for parents as well.

Whitney Barnhart: Awesome. That is so cool.

BG Hamrick: I would just just jump in there really quick before Whitney continues that if there’s anybody watching or listening to the podcast that can be a part of that to bridge that gap to help Sara get connected to the area hospitals please reach out to us, reach out to Sara. We’ll have her information, of course, you’ll hear it at the end of the podcast today and it’ll also be in the show notes, but make sure that you reach out to her and make those connections. It’s about people helping people, and you heard Sara say herself this is not very corporate there. It’s a community who builds relationships long-term, so that’s what we want to do to help families all around our region. So if you have any connections there or any influence, please reach out and help us help the community.

Sara Knight: To piggyback on that, when we do start that program, the way we do it here is groups like churches and boy scouts and businesses can have packing parties where we give them a list of everything we need in the parent bags. We tell them exactly how to do it. They collect everything, put them in the care packages, and then they get dropped off to the unit to be passed out. So it’s definitely something that anybody, any groups, families in the area could help us once we get started.

BG Hamrick: Yeah! That’s great. It sounds like fun, too. It sounds like a lot of fun.

Whitney Barnhart: Yeah!

Sara Knight: Packing party! Make it fun!

Whitney Barnhart: It reminds me of that like Operation Shoebox that we used to do for Christmas.

Sara Knight: Yeah. 

BG Hamrick: Exactly right. We used to do prison treats as well for some of the prisoners. We used to get together to give to them. So it’s a great experience. Lots of churches and non-profit organizations get together with these sort of events all the time. And they’re just great, community building, and just fun. Friendship building. It’s all part of just living life together. That’s what it’s about. And doing good things. I say that all the time. This is about doing life together whether it’s the good, the bad, the hard ,the easy, to dive in and be willing to find people you can do it with. So yeah it’s good.

Whitney Barnhart: That’s actually a really good segue into my next question which is, how can we as the community, of course, most of our audience is here in West Virginia, but even there in Virginia and all around the tri-state area, how can we help you guys do what you do and do it without being worried about funds or volunteers or anything like that?

Sara Knight: Yeah, I mean so 2020 was hard on us, of course, just like everybody else. One of our goals is to be able to say “yes” to the families that come our way. They deal with so much red tape. I mean, when families come to me sometimes they haven’t dealt with this yet, but a lot of times they have been dealing with insurance companies, or government resources, or other nonprofits that have so much red tape. They spent months trying to figure out how they can get their kid – what they need. And when they come to us, we’re like, “Alright, I’m ordering it today.” We are all about the “yes.” We’re all about no red tape. If a family qualifies for our services and we’re able to support them, the answer is “yes.” But the only way we can do that is by having the community support. We do – and last year we had to cancel all of our fundraisers, and of course that was no fun. So right now, until we can start having fundraisers again, we are very dependent on partners and donors. Whether it’s monthly donors or partners who want to offer their services. 

We are all volunteers. Even I am. i’ve never taken a salary for the position I have for the last six years or how long it’s been. I’m a realtor, so that’s how I’ve helped my husband pay the bills. And, thankfully, with his support, we’ve been able to do this without the foundation having any employees, and we have no rent. So we have no overhead. So truly the money that comes to us goes right to helping families however whatever that looks like. And that’s why we can say “yes.” That’s why in 2020 we were able to say “yes” all year long. We were able to help families without even blinking an eye all last year even though we cancelled all of our fundraisers. So we’re always looking for great partners like for example we had a partnership with a company who helped us build a backyard patio for a little boy in Nitro who his parents wanted him just to have a swing. But to have a swing, because he has special needs, he needed a sidewalk, and he needed a patio. So we partnered with local businesses to keep the cost down to just cost. So it let us do a big project within our budget. We’re always looking to partner with people who have certain services they might want to give directly to families. If somebody owns a spa and they want our Raindancer moms to be able to come have a spa day, or get a haircut, I mean basically anything you can think of, we will find a way to use your kindness and your offer to help directly. Of course things do cost money, so monthly donors are great. Even as little as $20-$25 a month adds up. Sponsors – corporate sponsors, business sponsors, really we appreciate any level of support whether it’s your time, your energy, your funds, your partnership, your prayers, we’re in for it all. So, when we do start this hospital program in the area, in West Virginia, that’ll be a great way to get people involved and let them kind of really have hands-on experience with helping our families in the hospitals and that sort of thing.

Whitney Barnhart: Yeah, great. And what’s the best way for volunteers or people who want to donate to get in touch with you in order to do that?

Sara Knight: On our website which is being redone but there’s still some places on there that you can get in touch with us. You can fill out the contact us form. There’s also a volunteer link, so if you go to our website sweetjuliagrace.org, you’ll see all the different things that we do, our programs, and then also ways to get in touch with us and to get more information about referring a Raindancer or getting signed up to volunteer. You find it all on our website.

Whitney Barnhart: That’s great and that kind of answered my next question, too, about families who wanted to apply to be Raindancers. They would contact you the same way?

Sara Knight: Yep. They can go through the website and fill out the form, or they can contact me directly at Sara no h – sara@sweetjuliagrace.org. It comes directly to me. It’s another way to get in touch with us.

BG Hamrick: Great. Fantastic. That’s awesome. Sara, this is really good and thank you again. I think I just want to make a call out to the area – businesses and organizations and networks that we have that might be listening. I realize we all have a lot to think about. We’re all giving back in different ways, and I wouldn’t pretend that The Sweet Julia Grace Foundation is the only way we can do great things in our community, but it sure is on the heart of Sara and it sure could be used for our community for us to rally to help her get into West Virginia into the Hurricane area to reach the community to help more families, to be a part and to grow the influence and the impact of this organization, this foundation to our local area. Here’s a foundation who makes a real difference in people’s lives and really helps them along. And they want to come to our community in a greater way, and they want to do more work here. So let’s answer the call and let’s reach out to Sara and see how we can help.

Sara I can promise you I’ll reach out to the networks that I know. We’ll see who we can get to help in whatever way we can because I want to see you do your life’s work which ultimately changes the lives of others. I’m just grateful for you, humbled for you being on the podcast today because people like you are rare. And we appreciate your life’s mission, and your life’s giving, and what little Julia Grace has done to inspire you and so many people to make a real change. I thank you again for being here.

Sara Knight: Thank you for having me. It was great to share with you all. And, like you said, our goal is to say “yes” to the families of West Virginia just like we do here and to not have any end to that anytime soon. So we love partnering. We love relationships. We love community, and we’d be honored to get to partner with your networks and anybody listening.

BG Hamrick: For sure. Well, we’ll do all we can and appreciate everybody for watching and listening. And, thanks Whitney again for being my partner in crime here. Helping me get the word out about great things that are happening here in our community. Don’t forget to look for the information of how to reach out to Sara and the foundation on our YouTube channel and on
Facebook. We’ll have all that information out there for you. So, again, thanks for watching and listening. I’m BG Hamrick. Have a great week ahead, and join us next time on the Local Impact Podcast.