Alec and Dr. Peter Smith talk about his lifelong connection to Shriners Children's and osteogenesis imperfecta care.
Melanie Cole (Host): Our topic today is osteogenesis imperfecta, and the story of an inspirational young man. My guests today are Alec Cabacungan, he's the national patient spokesperson for Shriners Hospitals for Children, and Dr. Peter Smith. He's an attending orthopedic surgeon and Director of the Osteogenesis Imperfecta Clinic at Shriners Hospitals for Children Chicago. Welcome to the show, gentlemen. Alec, I'd love to start with you. Tell us a little bit about your story. What's going on? Tell us how you've been.
Alec Cabacungan (Guest): Well thank you very much for having me on. I'm doing really good. I'm healthy, I'm actually in Shriners right now getting treatment, so everything's going really smoothly. My bones are really feeling good. I'm really happy to be here.
Melanie: So tell us a little bit about how it all began for you, and what your parents noticed, and how they came to Shriners.
Alec: Well my parents knew during birth that I was going to be- that I was going to have osteogenesis imperfecta. My parents found out about Shriners Hospitals for children, and they realized that we have one of the best osteogenesis imperfecta clinics here. And they started coming here, and everything just fell into shape. I'm getting my treatment here, I'm getting my rehab here at Shriners Hospital for Children. Everything has just been very- we were just very blessed to have Shriners in our life.
Melanie: Tell us why you love the hospital so much. Tell us about the team that's been helping you, including Dr. Smith.
Alec: Yeah, the nurses- they've been a part of my life since I was young. I know all of them because I'm at the hospital so much. Dr. Smith, he's family to us. He's done all my surgeries, he's given me advice that I'll take forever. My therapists Kathleen, Lisa, Brielle, they've all been awesome. They've helped me overcome a lot of obstacles and I can't thank each and every one of them enough.
Melanie: You said he gave you great advice. Tell us some of the bits of advice and/or hope that Dr. Smith has been with you for so long, and he's like family. Tell us some of what he told you, Alec.
Alec: Well Dr. Smith, he's always been by my side. He's always been my biggest supporter. He told me when I need to work out a little more, he told me when I need to get a little bit stronger. He's helped me understand that I'll be different, but I just have to embrace it. So without Dr. Smith, I don't know what would happen to me.
Melanie: The hospital recently named an indoor basketball court after you. What did you think of that?
Alec: Well, it's awesome. I have spent hours on that court practicing my basketball skills, and finding my love for sports. I took my first steps on that court, I've shown my friends the court. It's awesome. Shriners has been so great to me, and I'm just so humble.
Melanie: What's your favorite sport?
Melanie: It is, and you and I were mentioning off the air that you also have baseball practice. How many sports are you playing?
Alec: I'm playing only two sports. Got a lot of travel.
Melanie: Yeah, it's really great that you love sports so much. Now tell us about other families. What do you want other families- because we've seen you in the commercials, and you're so inspirational, Alec. What do you want other families to know about Shriners, and why they should come there for their treatment?
Alec: Shriners Hospitals for Children will help any family, regardless of the family's ability to pay. We help a lot of rare medical conditions from burns to cleft lip and palate to scoliosis. If your child needs care, then Shriners can help you. We have cutting edge technology here. For example, the EOS machine, which is amazing. I actually used it today. It was really cool. But Shriners, they're not just going to be there for you physically, but they'll also help you mentally. They have helped me learn that I'm more than just a kid in a wheelchair. They've helped me achieve my dreams and Shriners is awesome. I will recommend it to anybody.
Melanie: What a wonderful spokesman you are for that hospital. You want to work there one day?
Alec: Thank you very much. I would love to become a Shriner one day.
Melanie: Good for you, that's so awesome. Now Dr. Smith, just fill the listeners in a little bit about osteogenesis imperfecta, and also that you're doing that exciting research on the bone rodding techniques, and that they were developed there in Chicago at Shriners. Tell us a little bit about how that helped Alec.
Dr. Peter Smith, M.D. (Guest): Yeah, that's right. So our hospital has been interested in this rare condition for many years, even going way back before my time. I've only been here twenty-six years, and before that, even fifty years ago, there was an interest in this condition. And our understanding of it has grown, it's a genetic condition that affects one of the building blocks of bone so that the bone is brittle and breaks more easily. And also children affected and also too can have bowing, short stature, and these frequent fractures which are a big problem with their day-to-day life.
Fortunately it's been recognized for a long time that the intelligence of these individuals is superb, and therefore it's a terrific condition to treat, because if we can make the life tolerable for them so they can move around, and they can sort of fulfill their dreams, and be very active and productive people, like Alec.
Melanie: So tell us a little bit about the rodding technique, and what did that do for him?
Dr. Smith: Yeah, so it was developed at our hospital, like I said, about forty years ago, a technique to place metal rods within the canals of the bones, and in this way to reinforce them so they don't break as often. This is a surgery now that we can do mostly with using imaging x-rays and relatively small incisions. But it is a fairly technical and I would say difficult procedure for the surgeons to do, but also for the patients- the children to go through. But now we have rods that will actually grow with the children so they have to have less of these surgeries, and they can spend more time at home and school and the other places they're supposed to be.
Melanie: So Alec, last word to you. Just kind of give us a little bit of an overview of what you want all of us to understand about not only your role as the national patient spokesperson, which is quite a distinction, it's really amazing, but what you want us to understand about children such as yourself, and seeing you turn sixteen, and have this great distinction helping Shriners. Speak about your condition, and others. Tell us what you want us to know about you.
Alec: Well I just want everyone to know that I'm more than just a kid in a wheelchair. I would hope that people understand I'm pretty smart, I hope. I just want everyone to respect me. I might be different, but I still have a heart, I still have a brain, so I just hope that everyone can one day see past my disability and judge me based off of my beliefs and my emotions or my personality. I'm just thankful for everyone at Shriners Hospitals for Children. I'm very thankful to be on the show, so it's just been really fun. So I don't really know what to say because everyone's just so nice to me, and I just can't say anything but thank you.
Melanie: And we are all smiling as a result of everything you just said. Alec, thank you, and Dr. Smith, thank you so much again for joining us and explaining how you helped Alec. And Alec, we're all cheering for you, and I think that was a great summary of how you would like people to treat you, and to understand you as a person. So thank you so much for all the great work that you're doing on behalf of Shriners Hospitals for Children Chicago. This is Pediatric Specialty Care Spotlight with Shriners Hospitals for Children Chicago. For more information you can visit www.ShrinersChicago.org. That's www.ShrinersChicago.org. I'm Melanie Cole, thanks so much for tuning in.
About The Speakers
Alec Cabacungan, patient, and Peter Smith, M.D.Alec Cabacungan is a national patient spokesperson for Shriners Children's and lifelong patient of the osteogenesis imperfecta program in Chicago.
Dr. Peter Smith, M.D., is director of the osteogenesis imperfecta at Shriners Children's Chicago.
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