Meet Danica

Shawna and Randy both had a feeling around 4 weeks of pregnancy that they would have a special needs child. It took them 5 years to get a correct diagnosis for Danica. Danica has a very rare syndrome that affects the 5th and 8th chromosome. Her parents have taken life on with a very positive outlook and know that they were meant to watch over God’s child. This is their incredibly inspiring story of taking life one day at a time with an amazing attitude. 

Q: So how old is Danica and what condition does she have? 

A: She's 29 years old, and she has Sotos syndrome. Which is a cerebral gigantism syndrome. And it's an interesting story about how we learned about it, and how we learned that she actually had it. 

Q: So is it pretty rare? 

A: It's super rare. There's probably about 2700 - 2800  people worldwide that have it. 

It's an autosomal condition. So it came from one of us. And we don't know which, it's just super duper rare. 

Q: So when did you initially find out?

A: Shawna: I knew 3 weeks on or about 4 weeks when I was pregnant. I just had the feeling that we're gonna have a special needs child. 

Randy: And for me, I went to Montana State in Bozeman, and I was an English major. I had come home from school, and I'd write my rough drafts, Then I'd go fly fishing until it was dark and then come back, write my final drafts and, then go to bed, go to school, and turn everything in. Well, while I was fishing on the river on one particular day while Shawna was about 4 weeks pregnant, I had a strong impression telling me -  you're gonna have a disabled child.  I remember feeling that feeling come over me, and hearing that impression. I fought with God the whole rest of the day while I was fishing, and I kinda came to grips with it. Because what parent wants to have a disabled child where you don't know what their future is going to be? Are they going to be able to learn? Are they going to be able to run? Are they going to be able to play? Can they do sports? You know, what kind of hopes can we hang on this child? We didn't know. And those were all the questions that I had that I was throwing out there. By the end of my fishing trip, I had come to grips with it and realized that with him [God], we could get through everything. And I came home and I told Shawna, I said, Shawna, we're gonna have a disabled child, and she said, I know. So we knew well in advance. And then when we get to the 8 week ultrasound, they're like, uh-oh. Things aren't looking right, do you want us to abort this child? We're like, no. So we started preparing from then on. 

Q: Going along with that then, your initial reaction to obviously you felt beforehand you knew and then truly finding out what were those initial reactions? 

A: You know, for me she's got to have a body. She's gotta come down and have a body, and it's God's will. I'm kinda like, well, we're jus

t the babysitter of God's kid. We just, you know, went forward with faith and knew that he, God, was in charge and that's how we go forward. He let us know in advance too. So

he obviously knew that this was the kind of child he was sending

to us. It's kinda divine destiny. And now that she's in our life, she’s raising us. We're not raising her. She can deal with every kind of difficulty, with every kind of illness that's come her way. From seizures to sleep disorders, and tremors and still have a smile on her face and still be happy. She is pure, she's super pure. We get those glimpses of heaven every now and then when she's happy. It most often happens, like, it's interesting, after we have a really special family prayer she wants to hold us close, and she wants to look at our faces. We see an angel. So it's really hard to raise an angel. We really don't know what we're doing. 

Q: What's your typical day? 

A: We don't have a typical day. We just kind of wing it every day. We wing it every day because you never know what to expect or it's just changing. If t

here's any kind of emotion that you could go through, she goes through it about 15 times a day. All the emotions.

 We remember before we knew what she had, she was 3 or 4 months old, and she would cry all day. Every waking moment, she would cry, and she was writhing in pain, and we knew she was in pain, and I would come home from school, and Shawna would say, “I have to go” -  because it killed her. Because there's nothing you could do. We couldn't hold her and nurture her to cause her to not cry. She was in so much pain. There's a lot there, but one night she left, and I was with Danica, and I was trying to help her kinda settle down and finally maybe get to sleep. She was in so much pain, and I remember I had a yell prayer. I got up, and I just yelled. I said, “Can't you see she's suffering? Can't you see? I know you can heal her. I believe in you. I know you can heal her. Why won't you?” Then the Spirit whispered to me in a very direct and kind way, “How do you think I felt when I watched my Son in the garden and upon the cross? She has to go through this.” Ever since then, we just kinda went with it. 

Then we went to Salt Lake City. and they told us that she had one of the leukodystrophies, which is a white brain matter demyelinating disease and any child that gets that suffers and dies. And, there's no cure for it. There is a movie out there called Lorenzo's Oil, about a boy who had one of the leukodystrophies called adrenoleukodystrophy, but the movie really makes it seem like there's a cure. There's no cure, unfortunately. So they said, she has this. You’ll have to feed her through a tube in her stomach. She'll eventually lose function at everything and die probably by 2. Don't have any more kids because it's genetic. Go home and enjoy it. And we were just rocked. Completely rocked. I remember I would go down to the library, though, there at Primary Children's Hospital, and I remember digging into cranial and facial anomalies and some of the conditions. And I found Sotos syndrome, and I thought, well, she has some of these features, b

ut she's small. Sotos Syndrome people are giants. They're big, big people. 

So we go home, and we're heartbroken. Our doctor said, hey, the day Danica was born, I reached out to the former president of the neurological society, who happens to live in Montana and who happened to be driving through Bozeman the day Danika was born. She said, “I'll stop and have a look.” We didn't know that. But Doctor Mary Guggenheim stopped and had a look at Danica and checked her over. 4 months later, when she finds out that the Primary Children's Hospital diagnosed her with Alexander's disease, she said, no, bring that child over to me. We brought her, and she said, “this child is progressing. She's not digressing, she does not have leukodystrophy.” She had a DNA or a genetic specialist there with her, and looked her over. S

he said, “Well, she has many of the features of Sotos in her, but she's so small. So it probably can't be that.” I said, yeah, I remember reading up on that at the hospital. They said they didn’t know what it was. 

4 years later, we went to a cranial and facial anatomy clinic in Seattle. The doctor started asking all the marker questions for the diagnosis of Sotos. Before he finished, we said, we think you think she has Sotos syndrome, don't you? He's like, how do you guys know that? Because at the time, there were only 700. There were not very many, maybe even fewer than that in the world. So then we got a kind of an official diagnosis, and he explained the reason why she's smaller is because I'm not tall, and [Shawna] is not tall. We're smaller people. Then we saw a specialist at a Sotos Syndrome Convention. His name is Doctor Bradley Schaeffer. He specializes in Sotos Syndrome specifically. He checked her over and said she has it. Then we did the genetic test, the genetic test proved it for sure. So definitively, she actually has Soto Syndrome. And Sotos Syndrome is where the 5th and the 8th 

chromosome something's missing or swapped. Oh, she's got a big chunk off the 5th chromosome.

Q: So what would you say Danica has taught you? 

A: She's raising us. Yeah. She teaches us every day. Yeah. Every day. Be patient. How to have joy. 

Q: How do we deal with trials? 

A: They're not trials, they're learning opportunities for us. Because she's going to heaven. We just have to keep up with her, and that's how we live our life, and she's raising us. I think one thing that happened for us that it's been with us ever since it happened. God sees the big picture, he understands the beginning from the end. He already kind of told us through impressions that we were gonna have a disabled child. So we decided that we would have faith in him. We would be meek and submissive and full of love as a child and trust him. And as soon as we did that, as soon as we said, we trust you, no matter what, if you need to take her, you can take her. If we get to keep her, we'll keep her. We trust you no matter what. As soon as we said that, we've been carried ever since. We were filled with peace. 

Q: Do you feel like people have responded well to Danica? Like, how has that been as she's grown up? 

A: Well, you know, people stare at her, and people look at her, they point and everything. So we go look, they're staring, waving. So we turn a negative into a positive. As far as other people supporting her, she's a co-director of Serendipity Pageants. So we do Special Needs Pageants. There's a lot of people out there that have big hearts that support her, that, you know, help her through different things. Like her young women group, they actually took her ziplining. People that understand special needs people will love them and be their friend and try to get to know them. People that don't care, they'll walk away. They won't interact. Danica gives everyone an opportunity to kind of gauge where they are in life. Do you have the ability to look beyond what is normal, what is perceived as normal to understand someone who's different? Danica gives people that opportunity all the time. And, you know, and the thing about Danica, she loves everyone. 

 

Q: So how can others help support you and Danica? 

A: Go to our pageants! Just be a friend. You know? And when you see somebody that's special needs, don't be afraid of them. Just go up to them and say, hey, how are you? Look a little deeper. Even if they don't have a voice, they have a heart. Just love people. That's the biggest thing. I mean, they just wanna be included. They wanna have a friend. They wanna be loved and be a part of this world because they see the world way deeper than we do. There's a part in The Little Mermaid where she sings that song, Part of this World. Every time Danica hears that, she just bawls. Because that's what she really wants. She wants to be part of this world. She wants to be part of everything. We believe she understands that there's something that keeps her separate a bit. Her syndrome, her condition. She just longs to be part of that world. You know? 

Q: What would you like people to know and understand about kids with special needs? 

A: They are angels. They've got it made to heaven, whereas us other people have to work a lot harder. I wish people would be just a little bit kinder because they don't know what kind of battle they are fighting. Special needs people are very nonjudgmental to everybody, full of charity. Right now, a lot of times they get looked over or don't get the first opportunity, but I think when God comes they will be the first ones. I just think try to see people in a different light, we are all God’s kids. It takes a different attitude, and perspective on life. 

Q: Any advice for those that are younger parents with special needs?

A: Know that you are pretty important for God to send a special needs person to you for you to raise, for you to be a good babysitter. We don’t ask the question, “Why is this happening to us?” We ask the question: “what can we learn from this?” It doesn't happen overnight. You got to enjoy life, spontaneously. Change is an ongoing thing, that's the normal for us. 

Q: Is there anything else you'd like to share?

A: To new parents with special needs, just trust in God. He knows the big picture, and he's got a plan for all of us. He chose you to watch over his special angels. 

It was such an honor getting to listen to the Bragg's incredible story. We are so grateful they were willing to share it with all of us. There are lots of ways to support families with kids with special needs. It can be as simple as purchasing something from the Strong families collection as a gift for them, or for yourself as a way to show others you are there to support them. Other amazing ways are exactly what Shawna and Randy shared, be a friend, be including, and dig a little deeper. 

I wanted to end with one last sentiment from this interview: If you are a parent with a special needs child, they are an angel, and you are a very special person to be entrusted with taking care of them. We see you, we love you, and we support you. You’re doing a great job.