I recently spoke with entrepreneur, mother, and advocate Devina about her background, the challenges of raising a child with chronic illness, and her work for the Cystic Fibrosis Community.
Jason: I first became aware of your advocacy on social media, when you created "Baylor's Blend" to fundraise for CF. As an avid coffee drinker, I'm intrigued! Can you talk about the significance of this blend’s name, and how you got into roasting coffee?
Devina: So, I’ve actually been in the coffee industry for about 10 years. I started as a barista, and then---I'm from Canada originally---I ended up moving to the states where I worked at Starbucks, moved up as a supervisor and ended up being a manager for a while.
I was more interested in going beyond just crafting the beverages, and actually roasting. So, I bought a sample pack of green beans from a company in Oklahoma who sources them. I started with roasting coffee on the stove with a popcorn popper. And then after doing that for a while, you know, I have friends and family who wanted me to keep roasting them more coffee! I thought, maybe I can kind of make a little business out of this.
In February 2020, I launched Homebound Coffee Company. I got an actual coffee roaster and bigger bags of beans. My husband and I had just gone on vacation to California; that's when I decided, like, I'm gonna do this. When we got back two days later, everything got shut down for the pandemic. And not to mention, I titled my company “Homebound Coffee Company”---before everybody was bound to their home. I did my first year of coffee, and it was the year I was pregnant with Baylor. We had no idea that anyone in our family carried the genes for Cystic Fibrosis.
When was your daughter diagnosed? Can you tell us about your introduction to Cystic Fibrosis?
Devina: One lady---her son has CF and we had worked for her. She had done some fundraising in Seattle where she made a bunch of roses that are similar to the Beauty and the Beast - type roses, right? Well, it kind of blew up. It went viral. She was selling a crazy amount of them and we had helped her work on them. Five-and-a-half, six years ago that was now. We'd sit and help her, and her son would sit on the couch doing his chest physiotherapy. She would show us his enzymes and because we got pretty close with his family, we learned about CF through them.
I remember telling my husband, I was like, ‘Man, of all illnesses, I just think Cystic Fibrosis would be one of the hardest to have to deal with.’
Well, fast-forward.
Baylor was born in December of 2020 and everything was seemingly fine. We didn't realize it, but she actually had a Meconium ileus blockage; they missed it at the hospital.
I thought she had really bad reflux, but by her 7th day, her stomach was so distended; it was glossy, looked like a little frog. She wakes up and she has green vomit all over her. So, we take her to the ER and they didn't even hesitate; right away, they were doing an X-Ray and saw something wasn’t right. They sent her to our children's hospital, and of course, this was during the pandemic.
I remember walking into the ER and the doctor came and met me, and he goes, “Well, the good thing that we have going for us is that she's got a strong cry, but that's pretty much it.” They were saying she was really close to sepsis. It was just really dramatic, very, very quickly.
But they stabilized her, admitted her to the NICU, and the next day she had surgery. This surgeon called me, and he goes, 'Often times we see this in children with Cystic Fibrosis---like, 90% of the time. Do you have any history of CF in your family?’ And I go, ‘no.' So I'm thinking, okay, we're good. We're that 10%.
And, I don't know what makes somebody so confident in those moments that they're not the one that's gonna be affected, you know? But in my mind, I just really remember thinking like, okay, we're done with all this medical stuff now. A little bit later in the afternoon, they called us into a private conference room to tell us that her newborn screenings were positive for CF.
How long was this hospital admission for Baylor?
Devina: She was in the NICU for 41 days. She just had a really rocky start. And I think a lot of that played a role in me jumping into fundraising as quickly as I did, because I've had a lot of people talk to me---physicians and people who work with the CF foundation. They say, you know, ‘We do see some families who jump on right away, but there's some others who give it a couple of years before they actually start.’
I think for myself it was one of the ways that I felt I could almost resolve in my mind that she has this, you know? Okay; she's going to have Cystic Fibrosis. I'm going to do everything in my power not only to care for her as best I can, but to try to raise awareness and fundraise for it because I realize that without those efforts, her outcome doesn't look as positive.
When they tell us, ‘There's a lot of medications on the horizon for children born with CF now,' I know that's not without a lot of effort beforehand. And so, it seems like one of those things where I can thank those who have already worked really hard to this point, where my daughter is right now. I can feel that there's a hope for her future. Because of that, I don't want to stop.
Can you talk more about raising a child with chronic illness, and balancing daily treatments for CF, while utilizing social media to raise awareness about it?
Devina: For sure. One of the things that I think is really important is trying to be as real and vulnerable as possible. Emotions are complex, right? One day we can feel incredibly hopeful and then the next day we can feel like the weight of the world is on our shoulders. And so, it can be confusing sometimes. I think that having a child with a chronic illness…I don't want her whole story to be, oh, she has Cystic Fibrosis.
But CF does impact everything.
I mean, it's always lingering in my mind. I don't really put any kind of tips or medical information out there because CF is so unique to each individual. It’s so important that people are just talking to their physicians about it.
I talk about the emotional and the parenting side of it more. For example, we went to a fair in our city, and it was super fun. She had such a fun time. Of course, I was covering her hands in hand sanitizer the whole time. We had a great day. And we did exactly what we're supposed to do, which people say, ‘Live your life. Don't let CF stop you from living your life.’
And then in the evening, I sit there and I'm thinking what a great day it was. But then at the same time, my mind starts thinking: Did I expose her to illness? Is she gonna end up having to be in the hospital now for two weeks and a round of antibiotics because of this experience, because we did that?
But this is what we're supposed to do. I think as a parent of a child with chronicle illness, you just never 100% feel like you made the right decision. You have to just continue to try every day and give it your best. At the end of the day, there's only so much that we can control. I think that's really a big thing. I just feel like there's so much complexity to the emotions of taking care of a child with any kind of chronic illness.
Tell us about your latest endeavor in fundraising for CF…
Devina: This is the second year I’ve done RoseUp. A lot of my family, a lot of us do art and painting and stuff. It's been one of my personal hobbies for a long time, anyway. So, when I saw the opportunity for RoseUp---being kind of a fundraiser that you can do whatever you wanna do---I said: what if I painted; and in order to finish the painting I have to reach my fundraising goal, so people can interact and help me?
That was really fun and really successful last year, a way that I interacted and met up with a lot of people in the CF community. Which, again, has been so significant in my ability to just fight for Baylor every day; knowing that there is a whole community of people doing the same thing, and we all have the same goals. And it just feels like, you know, for my mental health and all that, it was hugely significant.
So, I wanted to do it again. But this year I decided that I also wanted to paint in honor of other people with Cystic Fibrosis, or those who passed too soon from CF; and share their stories because, I think, especially as medications increase in number, it's so encouraging to see.
It’s inspiring to see such drive in a new generation of CF parents. What do you hope to bring about through your advocacy, through your work; what kind of change?
Devina: I really want to see more people realize that they are impacted by CF. So, for example, one in about 29 people are carriers and it's mentioned as a rare disease. But when we actually think about how many people carry the mutated CF gene, I don't think it's as rare as it sounds. I will tell you---my best friend here, I met her six years ago. We had our first children around the same time. She was one of the first people I told about Baylor’s CF.
You wouldn't believe it: this January, her third daughter was born, and diagnosed with Cystic Fibrosis. It’s been a huge eye-opener to me that this disease can happen to anybody, because you don't know your genetic buildup.
So, one thing that’s really important to me is to help people realize; don't wait to get involved with advocacy and helping people who are chronically ill or disabled until it affects you personally. Start making an impact ahead of time, and start being involved. These are members of our community, and I think that's one of my really big driving factors---motivating those who are not a part of the CF community to realize what this world looks like for us and why they should also want to advocate. That’s part of the reason why I’m also sharing other stories of people with Cystic Fibrosis as I paint.
Jason is a filmmaker, brand ambassador, writer, illustrator, and is
currently pursuing a degree in the field of I.T./Cloud Computing.