Cheryl Martin (Host): Every year on October 25th, National Dwarfism Awareness Day celebrates little people. The day also spreads awareness for achondroplasia, a bone growth disorder that causes dwarfism. We're here today with Kali Braithwaite, a former patient of Shriners Children's Portland's Chief of Staff, Dr. Robert Bernstein. He was a part of Kali's medical team in Los Angeles, and they've maintained a relationship after Dr. Bernstein made the move to Shriners Children's Portland. We're excited to dive in with Kali to talk about her life, her medical experience with Dr. Bernstein, and Dwarfism Awareness Day.
Welcome to Heroes PDX, a podcast series from the specialists at Shriners Children's Portland. I'm Cheryl Martin. Kali, glad to have you on.
Kali: Thank you so much, Cheryl!
Host: So, first of all, how old are you and where are you from?
Kali: So, hi, everybody. My name is Kali. I am 24 years old, and I live in Broken Arrow, Oklahoma.
Host: You're in Oklahoma now. So, tell us a little bit about achondroplasia.
Kali: So, achondroplasia is a type of dwarfism/skeletal dysplasia. There are over 300 types of dwarfism. I have the most common one, which is achondroplasia. So, achondroplasia is where you have short arms, an average-sized trunk, a big head and short legs.
Host: So, you are a former patient of Dr. Bernstein. What led you to seek care from him in Los Angeles?
Kali: So, I first met Dr. Bernstein during a Little People of America Regional Conference in California. He was offering medical consultations at that conference. I attended a consultation due to ongoing back pain I was experiencing. So during the consultation, my mom and I discovered that I had both scoliosis and kyphosis, indicating that I would probably need spinal correction surgery to fix that.
Shortly after we met, he moved to a different hospital, but he assured my mom and I that it would be a smooth transition. By entrusting my care to the capable hands of Dr. Ganjianpour and the late Dr. Acosta, which were both at Cedars. Years later, I met up with Dr. Bernstein because I was having issues with my arms. I couldn't do the things that normal people could do, like get dressed on my own and use the toilet, all that. So, we met up with him to talk about maybe extending my arms and seeing what that would entail.
Host: And did you decide to go with that?
Kali: Yes. So, we did decide to go with it, yes. We did do the arm lengthening surgery.
Host: And it was successful?
Kali: Yes. I mean, not every surgery is successful, but we did achieve the length that I needed to be able to do things, swear on my own.
Host: That's great. Now, Kali, talk about what it's been like to maintain this relationship with Dr. Bernstein.
Kali: I mean, I think it's pretty amazing to still keep in touch with him. I see him at every LPA, little People of America National Conference that I've been to. And I would go to his workshops and all that. So, I think it's been really incredible that we've been able to keep in touch.
Host: Because you're now 24, how old were you when you met him for the first time?
Kali: So, I met him when I was about 10 or 11.
Host: Wow. So, this has been a long relationship. Why has this been important to you?
Kali: He's a doctor that knows skeletal dysplasia. And he's just a very nice and kind person. And I think that's what you want when you want to be with a doctor, you know.
Host: That's great. So, tell us, what have you been up to since then?
Kali: I graduated college, I attended Oklahoma State University, and I got a Bachelor's Degree in Business Administration and Marketing with a minor in HR, Human Resources.
Host: Great. Are you working in that field?
Kali: I am currently seeking a job.
Host: Okay, wonderful. Your mom has written a book called "I'm Just Small, That's All," inspired by your journey with achondroplasia. What does this book mean to you?
Kali: So, my mom wrote the book when I was in preschool to help my classmates understand my differences, that I was short and unique. So, it was very helpful as I went from preschool to elementary school, educating my classmates on what my condition was, and that even though I am different, I'm still just like everybody else.
Host: So, tell us about your LP Spotlight Series. What is it and what are you hoping that people will get out as a result of watching it?
Kali: We have a Facebook page called "I'm Just Small, That's All" that's inspired by the book. A year ago, I launched a Facebook series called LP Spotlight, where I interviewed fellow Little People on what October means to them and what does National Dwarfism Awareness Month means to them and all that. And the first year, I just interviewed my friends who were little people and people that I knew in the Little People community. And then the second year, I interviewed Little People reality kiddy stars. But also, I sprinkled in a few medical episodes into it, so people like Dr. Bernstein and then another doctor, because this month shouldn't just be about us. It should also be about celebrating the doctors that help take care of us.
Host: So, while the 25th of October is National Dwarfism Awareness Day, you actually celebrate the entire month. And what does it mean to you?
Kali: I think it means because we're educating people and that's what my series that I launched on Facebook. I just really want people to just be inspired and just tune in to a good story, but also educate people on what dwarfism is and all that. And I think kind of Dwarfism Awareness Day means to us is we're just educating and we're just letting people know that we shouldn't be ostracized by society. We're still able to do things. We're still able to be people, but we just do things in our own way.
Host: I love how you described yourself earlier. You know, I'm short and I'm unique. So, you don't see this as a hindrance to you having just a complete life and you totally accept your packaging.
Kali: Yes. There's some days I wish I was tall. You know, there's some days I wish I could be the same height as my parents and my brother, you know. But there's also benefits to my size. I can reach things down low. I can help my parents out if they can't reach something down below, you know? So, I mean, there's benefits and there's hindrance, but I look at the positives more than I look at the negatives.
Host: That's wonderful. Kali, what are some other things in closing that you would just like people to know? You've shared a lot already, but what would you like people to know about having achondroplasia or just your life?
Kali: I mean I touched on a lot of things having achondroplasia, but it's just we shouldn't be outcasts. We should be included in society and we're citizens. Even though we're disabled, we should be a part of life and all that. So, you know, even though I have a achondroplasia, I still am a person and I still do things just like every other 24-year-old, just in my own way.
Host: That's a great way to end. You are a person, you are an inspiring person, and there is a specific reason that you are here. And I'm so glad that you're using your platform to inform and educate others about achondroplasia, and also exposing them to others so they can see that you are full of life and you offer so much and that you should not be discriminated against in any way.
Kali Braithwaite, thank you so much for sharing your journey with us. And as I've said, you are an inspiration. Keep doing what you're doing.
Kali: Thank you.
Cheryl Martin (Host): To learn more, head on over to our website, shrinersportland.org. And if you enjoyed this podcast, please share it on your social media and check out the full podcast library for other topics of interest to you. That concludes this episode of Healing Heroes PDX with Shriners Children's Portland. Thanks for listening.
