The SIP: Episode 3 Transcript

Learn more about The SIP and its third episode, Becoming an Advocate for Children with Rare Diseases with Sarah Turnbull (1996), here.

[Intro music plays]

Justin J. Pearson:

Welcome back to The SIP. The podcast that shares a taste of the Coke Scholars around the world who are igniting positive change. My name is Justin J. Pearson, and I am a proud 2013 Coca-Cola Scholar originally from Memphis, Tennessee, and now living and working in Boston, focused on Social and Economic Justice.

For those who are listening and may not be a Coca-Cola Scholar, welcome, we’re glad you’re here. To give you a little background. The Coca-Cola Scholars Foundation is the largest achievement based and corporate sponsors scholarship program in the country. Each year, it awards $20,000 to 150 high school seniors across the country who share a unique passion for service and leadership. It’s a competitive program to get into, but once you’re a Coke Scholar, the benefits go far beyond the money for college. You become part of this bigger family for life. If you want to learn more, you can visit their website, coca-colascholarsfoundation.org

In today’s episode, 1997, Coke Scholar, Jolene Loetscher will be talking with 1996 Scholar, Sarah Turnbull. I have the pleasure of knowing Jolene as a personal friend through the Coke Scholars Network. She’s an entrepreneur, an advocate, a community builder, and a social change maker. As one of the Midwest, leading voices for protecting children and advocating for survivors of child abuse and sexual assault, Jolene Loetscher has put purpose to the pain of her childhood.

Jolene started her career as an award-winning television reporter, but in sharing her own story, she learned the power of public policy to change lives. She’s worked to repeal the statute of limitations on rape in South Dakota and as the namesake for Jolene’s Law, which has created the center for the prevention of child maltreatment and guide South Dakota’s plan to end child abuse by 2026. As an entrepreneur, Jolene is the CEO of the most honored same-day documentary and advertising agency, Mud Mile Communications and its newest division Adrenaline Sports Marketing. Jolene graduated top of her class from Northwestern University and received her MBA in Global Executive Leadership from the University of Nebraska. She’s also South Dakota’s first Presidential Leadership Scholar.

Jolene will be interviewing Sarah Turnbull who has become a personal friend of Jolene’s through the Scholars Network. Sarah is originally from Southeast Iowa and graduated from Central College in Pella. After college, she worked in the insurance industry in Des Moines before falling in love with the Dutch boy thou her husband, Travis, and returning to Pella where they live with their three children, Treyton, Stella, and Sayer.

When her daughter Stella was born with Spinal Muscular Atrophy, her life took on a new direction and purpose. It became her life’s mission to care for Stella and educate people about SMA. Sarah also runs a photography studio called Sarah Studio and volunteers as a Now I Lay Me Down to Sleep photographer for parents who lose a child at birth, get ready to be inspired by these two powerful women and their stories that will help each of us to live life, a little more inspired and a little more grateful. Here are Jolene and Sarah.

Jolene Loetscher:

Hey, Coca-Cola Scholars family. I am Jolene Loetscher. I am a 1997 Coca-Cola Scholar and I am ridiculously and insanely excited to have this conversation with one of my heartland, Midwest scholars, but also just one of the most incredible human beings that I know Sarah Turnbull, 1996 Coca-Cola Scholar, and just all around amazing rockstar, make the world better human. Sarah, so happy to have you with us. You’re joining us from beautiful Pella, Iowa.

Sarah Turnbull:

I am our tulips are blooming and nobody’s welcome to come see them. Thanks to quarantine.

Jolene Loetscher:

[laughing] We can take them all in. And so you’re in Iowa, I’m in South Dakota. I was in Nebraska Scholar. So we get to cross paths a lot on our Midwest, different get-togethers that we have, though not enough. But I want to just start with, what did you think you would be doing when you were 17 years old and you were at your Coke Scholars Weekend. What did you see for yourself?

Sarah Turnbull:

So yeah, going back to 1996, it was a different Scholars Weekend and that’s for sure. Just logistically it was way different. And you were really interviewing for your scholarship while you were there. First of all, I was very shocked to be a Coke Scholar, just like, “Why me?” I had always been a good student, I had been big on service and that sort of thing, but I really didn’t understand why little old me would be at this ridiculously awesome, cool scholars venue. And I was going to go to Iowa State University because coming from a poor farming family, I thought that’s all I was able to do, and Iowa State is a great school, but it’s just not the school that was my top pick. And so I didn’t think that I could afford a private college that was of my interest. I was just very thankful to be there. I had so many interests in life and was really excited to get out in the world and I was excited to study abroad and all the fun things that college could offer and get out of little rural Iowa for a while.

Jolene Loetscher:

What I think is so fascinating about you and about your story is that it speaks to how Coke Scholars go to where they’re called and for you, that calling was home, it was Iowa. Take me through like being at home or coming back home and what that’s meant for you.

Sarah Turnbull:

After college, I had a great position at an insurance brokerage and was really doing well in the professional world. And then as life has it, it’s a journey and you have to be willing to adapt however, that is. So we have three children, my husband and I, and he’s also from Iowa and our first child was a healthy baby boy. And then when we had our second daughter, we were really thrown on a tailspin because she, at one month of age, suddenly lost her muscle tone. And she was diagnosed with Spinal Muscular Atrophy, which the best way to put it in layman’s terms is that it’s basically like the child form of Lou Gehrig’s disease. People understand what Lou Gehrig’s diseases. It’s basically like muscle wasting, the brain is unaffected. So really kind of trapped in their body. And when she was just one month of age, we were told that she would live weeks or months.

And so our lives just completely changed at that moment. I started down the road of finding out how we could help her. I wasn’t going to give up without a fight that’s for sure. My husband and I are both very stubborn, started researching the disease like crazy. It’s the leading genetic killer of children. And both of you have to be a recessive carrier. Processing that to that, my husband and I both were the reason that she had this disease was difficult. The thought of losing her was difficult and had to go out and figure out what our next steps were.

Jolene Loetscher:

What was that like? I think for me as a mom, especially a baby, you take them in for a cold or cough, and sometimes you go into what I call “mom paranoid mode.” But for you, you take Stella in, when you hear that, what thoughts, take me into that moment of what crossed your mind first.

Sarah Turnbull:

Yeah. So it’s interesting. I’ve always been raised to believe that whatever life deals you, we deal with it. That’s just kind of the rough and tough that I was raised with. And I often asked why a little bit in my head, but at the same time, I think I was just so willing to fight for her and figure out if there was anything we could do. And if she could be the game changer and all this. Definitely the underlying side of it, knowing that she would pass away within weeks or months was incredibly difficult. Here we were very blessed to have this beautiful little girl and not being able to help with was really difficult. I think we were just constantly trying to figure out ways that we could help her.

Jolene Loetscher:

So she makes it through those weeks and those months. How do you do one foot in front of the other? Do you keep everything moving forward? And how did you progress over the next, let’s say, through those toddler preschool years with her?

Sarah Turnbull:

So those first years were really a huge learning curve. And a lot of doctors in our area were not familiar with the disease or their familiarity was really limited. So we had to look for outside resources. We were willing to take her wherever we could. In the country, fortunately, there was a very good physician that was an expert just nearby in Wisconsin. So we were glad to finally be connected with people that actually knew what was going on and could help us. But at the same time, we were sort of rewriting the history books at the same time because she shouldn’t have made it. And there were a lot of things that we did that maybe were considered experimental, but have ended up being things that other families have been able to take away and help their own children.

I feel like the first few years of her life, we really focused on getting her to the next level. It was always like, “Okay, if we could just get her to her first birthday and then her second.” And we really focused on quantity of life. And then there, her later years, it’s been more quality of life and more advocacy and reaching out to others.

Jolene Loetscher:

What was the family dynamic like? I always wonder for families where one child becomes ill and you have to put a lot of focus into that, but the family dynamic as a whole.

Sarah Turnbull:

I was very concerned that our oldest would regress or be combative because Stella was very much our squeaky wheel and it has been anything but that. It’s only been love and she is his best friend. So it’s been really cool to watch them grow. I hope that because of our experience, I like to look at the positives in each experience. And the one thing I can see is that I hope he’s a better human because of her. And he definitely reaches out to others. He has compassion. And so those qualities that I’ve always wanted and hoped for him to have, I definitely have seen in him as a result of his circumstance. So whether it’s how we modeled that for him or if that’s just his nature, but it’s been a really cool relationship to see.

Jolene Loetscher:

Now one of the things I love, because I think we saw each other back at the end of 2019. And you told me about Stella’s a foray into politics. And one, I was just so proud of her because we need amazing people, even in middle school to run for office, but take me to that conversation and how it goes from, Stella maybe running, to Stella actually being a Hunter Student Council.

Sarah Turnbull:

Yeah. So she came home from school and she does go to school with a nurse. So she is so medically fragile that she does have a ventilator, a trach, a lot of equipment. So she does go to school with a nurse in tow and she came home and she was so excited about something. And the nurse said, “Well, you’re never going to believe this. She wants to run for Student Council.” And I was excited about it. But there was part of me that thought, “Oh, I don’t know.” I had just been jaded by a circumstance in which people kind of criticize the fact that she wasn’t able bodied. And so therefore didn’t feel that she had as much to offer. So when she said she wanted to run for student council and I found out there were a lot of kids that were running for student council, my initial reaction unfortunately was, “Oh man, I don’t know if this is a good idea. Those other kids that are able bodied could offer more.”

And that was the first time in my life that I had really done that with her. Because I had always been very positive and, “Okay, Stella, you want to show a goat at the county fair? Let’s do it.” So we have always been very positive in whatever you want to do. We will try to figure out if there’s a way that we can adapt that so that you can do that. So I was really disappointed in myself that for the first time I was actually kind of being the naysayer. We helped to put together her application, she submitted it and I just finally was like, “Okay, well, if this is meant to be, it’ll be. That’s great.” And next thing I know, I get a notification that she was one of the top kids that was selected to be on Student Council.

So she has thoroughly enjoyed it, she gets very little opportunity to feel empowered because of her disability. And so this has been absolutely something that’s opened doors for her. She loves to play on middle school dances and all those fun things that we always looked forward to in middle school. And her peers take so much away from their interaction with her.

I remember when she was in kindergarten and I thought, “What did these other parents think, with this child in the class that you know is going to need some extra assistance and always are going to take away from their education somehow.” And I’ll never forget, there was a parent in kindergarten who said to me, “Thank you for sending her to school. Because of her, our kids are going to grow up to be better people.” And I will never forget that parents saying that to me. And it has rung true through her years. She definitely still obviously has adversity due to the physical barrier and kids saying things, whatever, but in general, they’ve been very embracing and I’ve had so many parents say that they’re very thankful that she’s part of their lives.

Jolene Loetscher:

Well, and I’ve loved following Stella’s story and yours and the whole family, because it is such a great inspiration and a reminder that we don’t need to let things hold us back. And that life has this incredible blessing to be lived in the moment. I wonder for you Sarah, when you have those quiet moments in either at the end of the night or the first thing in the morning, what is it that motivates and inspires you to just get up and go?

Sarah Turnbull:

Her life has truly been a roller coaster. We have seen so many medical miracles happen in her life and just completely astounding things, some in which were nearly losing her due to a couple of surgeries, that sort of thing. And we’ve seen her come back from that. And as a mom, you always hope that you will teach your children and you will be the one to instill these things in them to help them fly. And I think for me, she has taught me more just by being my daughter, then I could ever teach her. And I’ve heard that from so many different individuals and whenever life throws them a lemon, they’re like, “But Stella did it, but Stella was able to overcome.”

And so I guess I look at my life and realize, “You know what, we can overcome this, it’s okay. And whatever it is, whatever the journey, whatever the outcome, we’ll wake up tomorrow and it’s a new day.” And I know that sounds really cliche, but it really is what helps me move on the next day. And I will never question her purpose because it’s very obvious that her purpose is to inspire others and help them count their blessings and really use what they do have to make a difference in this world.

Jolene Loetscher:

And I think when we talk about purpose, one of the amazing things that you’ve been doing is trying to work on an advocacy and on a policy side to get screenings done of newborns.

Sarah Turnbull:

Yeah. So one of the really exciting things about Spinal Muscular Atrophy is that they actually know exactly what causes it. A lot of diseases don’t have that luxury. And so they’re able to know exactly what proteins are not working appropriately.

So back in 2010, I actually went to the National Institute of Health and was one of the families that spoke on behalf of the families of SMA about how critical a gene therapy trial was to these families. And how we literally had nothing to go on. We were drawing at straws to figure out how to help our children, get them through illnesses, keep them healthy, respiratory wise, put them through endless surgeries and to explain to them what gene therapy would’ve meant for us.

So fast forward clinical trial went through without a hitch. And we now have not just one but two treatments for SMA, which is super exciting, but it has taken a lot to get there. It’s taken a lot of advocacy to help others realize the value of the children that are now older and deserve the opportunity to have these treatments. And so that’s taken a lot to convince them because obviously these children have lost motor neurons. They’re not as strong as a brand new baby who’s going to get the treatment and to help them see the value in that child and that their lives are really fulfilling.

So there’s been a lot on that. And now we are currently in the process of getting newborn screening approved in the State of Iowa. There are a lot of States that have approved it, and I was eventually going to get there as well as some neighboring States, we hope, and it is just truly life changing for these families. I’m so excited for the future generations that will not have to hear, “Take her home and love her. There is nothing you can do.”

So that is super exciting. I’m also thankful that Stella was able to get the one treatment. The other one we really wish she could get, but we’re just thankful that she is able to get one of the treatments that does stop progression of the disease. So we have not seen any further progression of the disease over the past two years, which if you know like ALS it is progressive. So that has been great. And we’re just super excited for future generations. A lot of people ask, “Well, do you wish that you were back there? Do you wish that she was a baby able to get that?” And, “Absolutely.” But really we know that her purpose was to be in this world, how she is and the lives she’s changed. I can’t live with that regret of her not being born now versus 13 years ago.

Jolene Loetscher:

One of the things Sarah, that I am also inspired by you is you just have a hunger to learn. And I think that’s probably pretty universal of most Coke Scholars, we can’t get enough learning, but you recently decided to go through the process of becoming a paramedic on top of being a business owner, which we forgot to mention where you’ve got your photography business, you’re I say, momming, advocating and you put one more thing on there.

Sarah Turnbull:

Yes. So, and I’m actually an EMT, paramedic is the next step. Like you said, Coke Scholars, I think in general have this unending need to learn. And about five years ago, I kept feeling the push to go through the classes to be an EMT. And it’s kind of an interesting time to become an EMT considering COVID-19.

So that has been a whole host of new, exciting journeys. I’m wearing a Ghostbuster costume to work as you’re transporting patients, that sort of thing. But I just really felt that tap on my shoulder, that this was the next thing I was supposed to do and was thankful that my husband was very embracing of that. I think he kind of knows at this point that if I’m wanting to do something it’s probably going to happen, but I’m thankful that he is very embracing of that.

I didn’t have maybe the medical knowledge that perhaps a nurse who becomes an EMT might have, but I had the experiential component and the think outside the box kind of mindset that was needed for an EMT. Because when you come on the scene, it may be completely different than what was dispatched. So you’re just ready to take on whatever is in front of you. And there’s a Brandon Heath song that says, “If not me, then who?”

And that was kind of the song that kept resonating in my head, “If I don’t do this, then who is.” And there are a lot of people that feel, they couldn’t walk into those scenarios, but with everything we’ve been dealt I can now, God’s provided me with that ability to do so. Whereas I still remember 15 years ago passing out because our dog cut himself. It’s so funny how you can go from one extreme to the other. I’d never imagined I’d be in the medical world. And right now I’m contemplating going on to finish and getting my paramedic. Because as a paramedic, I can do even more things. So I think my husband’s probably already figured out what’s going to happen.

Jolene Loetscher:

I think we all know, anyone listening goes, “Yeah. Okay. It’s happening.” When I hear you tell the story about deciding like, “I’m going to be an EMT, and this is where I was called.” And how you need something else to do. It makes me think too, of how self-care can often times be service. Or service is self-care, and sort of how those two worlds can really live together. And you embody that in what you’re doing.

Sarah Turnbull:

Yeah, it definitely is what helps me, because I think sometimes we can delve into the woe is me kind of situation. And if I look at others in our community with very able bodied children and knowing that my child is the weakest of the weak here in our community, that can get a bit depressing, especially when others are meeting milestones and able to do things that she would love to do and isn’t able to do. So by putting yourself into service, you hear the stories of others who are maybe fighting a very different battle, but it’s just as crazy. Or their needs are very much there, just different than your own. And so it’s so important to do that, so you don’t lose focus. I’ve always been a positive person I feel, but I think it definitely helps to keep me grounded.

Jolene Loetscher:

Now we’ve got the fast five questions are coming up, but before we get to that, before the world shut down, like literally hours before the world shutdown, you and I got to be part of an incredible experience that will make its debut at some point, Coronavirus to the side, but we got to surprise one of the new members of the class of 2020. What was that experience like for you?

Sarah Turnbull:

I was so thankful that you reached out and asked if I could help surprise that scholar, because it was just phenomenal. It took me back to when I got my surprise and just to see his face and his family and his school being able to celebrate him and the things he had done and to see his humble nature about it all, despite all the amazing things he’s done is just truly what a Coca-Cola Scholar is. And so it was really a great experience. Brought me back to my youth a little bit. And it was just so fun to welcome him, to the Coca-Cola family.

Jolene Loetscher:

It’s always one of the most amazing experiences. And days when you get to really bring folks back in or welcome them into this amazing family. Okay. Now, are you ready for this?

Sarah Turnbull:

Sure.

Jolene Loetscher:

Right. We are going to do the fast five. So I want you to answer these questions with the first thing that comes to mind. I know it’s always weird to tell a Coke Scholar don’t overthink it.

Sarah Turnbull:

You know they do. They always will.

Jolene Loetscher:

Oh, okay, here we go. What are two apps or websites you can’t live without.

Sarah Turnbull:

Well, anymore I’d probably have to say Facebook. And unfortunately Zoom. Zoom has become my life since quarantine. So I should have bought stock in Zoom.

Jolene Loetscher:

It’s so many of us, I think are thinking the same thing.

Sarah Turnbull:

Yes, yes.

Jolene Loetscher:

And Facebook, you chronicle Sarah’s journey and your family’s journey. So I’m sure anyone that hears this, it’s a great way to kind of out to you and follow that.

Sarah Turnbull:

Yeah. Everybody kind of puts Facebook down, but I have to say that because of Facebook lives have been changed through connection of families. And my husband lasted all my Facebook friends and I said, “Well, look at them, they’re all SMA families.” And as you move on in the SMA journey, you kind of become one of the matriarchs and the disease. And so you have these young families that are looking up to you and we’re able to help them in the middle of the night when they have questions and there’s not a doctor that can help them. So there’s a lot of really good things that have come out of Facebook.

Jolene Loetscher:

Next question. All right. I want you to grab your iPhone. What song is on there, that would surprise me the most?

Sarah Turnbull:

Let me see here. Well, I love Ed Sheeran. [laughing]

Jolene Loetscher:

Oh! [laughing]. Yes. Ed Sheeran. All right. I’m good with that.

Sarah Turnbull:

Yep. Yep. Definitely. Ed Sheeran. Now I can’t turn them off. There’s also Taylor Swift on there. Stella actually got to meet Taylor Swift. So we’re huge Taylor Swift fans as well, so.

Jolene Loetscher:

Your favorite book or piece of music or art that has really inspired you or helped you through life’s journey?

Sarah Turnbull:

I would have to say my favorite book is actually A Diary of Anne Frank and I really resonate with, and I think in some ways, I’m not near what she went through. Don’t take that that way. But just one of my favorite quotes from her is, “How great it is that we needn’t wait a single moment to change a life.” And despite it all, I feel that people are still good. And so I just really love that. And I carry that with me in my day-to-day life that we can all be game changers, no matter where we’re at in life. I’m no longer some well-respected person in corporate world, but I can still make a difference through advocacy and helping others.

Jolene Loetscher:

You probably kind of already answered this one, but what quote or motto do you live your life by?

Sarah Turnbull:

Yeah, I definitely live by Anne Frank. One that I share with Stella a lot is when the fairy godmother says to Cinderella, “Even miracles take a little time.”

Jolene Loetscher:

Finally, what makes the Coke Scholars Program and network unique?

Sarah Turnbull:

My husband, when we first got together a few years ago for a dinner that you and your husband were at, he said, “I’m really anxious to see what this Coke thing is all about because you just have this connection, even though you haven’t seen these people in years.” And at that point, I really kind of was on a hiatus. I hadn’t seen any Coke Scholars for some time. And so I was really excited to see that more connection was starting to take place even in our little rural Midwest.

And it is really unique because you do feel part of a family that is embracing you throughout your years. It doesn’t just end when you receive your last year scholarship, it goes on. And if there is a need that you have, you can reach out to others and perhaps there’s another scholar in your area that can help you. I don’t even think of it as just a scholarship program. It’s really an all-encompassing stop shop kind of thing. Because whether it’s you need connection or you’re able to help somebody else and just meeting the Coke Scholars, any chance you get is like having a kindred spirit. It’s just magical.

Jolene Loetscher:

It’s like a whole network of fairy godmothers, right?

Sarah Turnbull:

It is. Absolutely.

Jolene Loetscher:

Sprinkling all of their fairy godmother, is it dust, magic, sprinkles.

Sarah Turnbull:

Pixie dust, or something.

Jolene Loetscher:

Pixie dust. There we go, pixie dust. Well, as we wrap up here I know as people hear this and are of course inspired and touched by your journey and Stella’s and your whole family’s, what are some ways that people can help you in the work you’re all doing to kind of keep that fight moving forward?

Sarah Turnbull:

Yeah. So I think in each of the States, there’s really this push for newborn screening and it almost seems silly to not do newborn screening when there’s treatments for these children. And so I think anybody that has a personal connection to a family with SMA, or if they could just kind of help join that fight and support when it comes to their State to help write legislators, that sort of thing. These kids do matter because not only does newborn screening help families to get the answer sooner and get them treatment sooner, you’re not only helping the child, but you’re helping the family. You’re helping the community, the country because these kids’ lives are super important and will change other lives.

And so anybody that can write to legislators would it becomes a hot topic in their State is really helpful. And when you meet families with disabilities, I think sometimes people are afraid to say anything and they are afraid to say the wrong thing, but these families need you to reach out and just say hi, or to interact with their child, that mom or dad could have been up all night, turning their child, giving them feedings, whatever the case is, and they just need somebody to say hello. So it’s just a simple act of being kind to these families. Don’t feel like you’re going to say the wrong thing. Just be kind, just treat them like you would any other person, so.

Jolene Loetscher:

Well, Sarah, thank you for your time, for your story. And I think for the inspiration that you all give the world and how you just, you live the Coke Scholar mission and in everything that you do, that you serve. You serve and you change the world and you do that where you’re called to do it. For you, that’s in Iowa, but it’s also all around the world when you share your story. So thank you so much for sharing it with me. Selfishly, I am always excited when you and I get to chat a little bit, over a lot, never enough. I’m so grateful for the work you’re doing. So thanks for joining me today.

Sarah Turnbull:

Well thank you for having me. It’s always great to see you as you know and I can’t wait for our next gathering or phone conversation. It’s always delightful and a day brightener. And I think Coke Scholars have this natural connection and we just lift each other up and are able to share where we’re at with our advocacy or what we’re embarking on. And it’s kind of like you have your own personal cheerleader. So thanks for being my cheerleader, Jolene.

Transitional music plays

Justin J. Pearson:

We hope that this episode of The SIP was meaningful and inspirational, featuring Jolene and Sarah. To learn more about SMA and other things they discussed, check out our show notes or coca-colascholarsfoundation.org. Look forward to seeing you next time on The SIP.