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Story of an Alpha Thalassemia Baby

Living with Thalassemia

Living with Thalassemia:
Student Projects:
"Blood Transfusions - the Lifeline for Thalassemia Patients", by Natalie Maino
Patient Stories:
▶ Thuy Carpenter
▶ Chandan Das
▶ Paul DiLorenzo
▶ Meghan Foe
▶ Jane Huynh
▶ Rammeet Kaur
▶ Kim
▶ Perry Lai
▶ Imsub Monmeesin
▶ Braulio Navarro
▶ Huythong Nguyen
▶ Olivia Stahl
▶ Siddhant Talwar (2009)
▶ Siddhant Talwar (2015)
▶ Abby Torkelson
▶ Susan Winner
▶ Karim Zamani
▶ Serafina Sammarco: Isabella's Journey

Patient Stories

Interview with Olivia Stahl

Thuy Carpenter, Olivia Stahl
Thuy Carpenter(left)
Olivia Stahl(right)
Q: How did you hear about the Painted Turtle Camp and what made you decide to go?
A: I heard about the Painted Turtle Camp from my doctors down in Oakland. I think what really made me decide to go was that I really wanted to meet people who had similar diseases and who could relate to medical things I was going through. Also, it was a way for me to kind of step out of my comfort zone a little bit. It also happened to be in sunny Southern California, and I didn’t want to miss a traveling opportunity like that.

Q: How did you feel about going to camp for the first time?
A: Honestly, I was scared to death. I was scared that I wasn’t going to meet anyone, or that no one would like me. It was like the first day of freshman year all over again…gahh! But at the same time, I was excited to meet new people, try new things, and take risks.

Q: What did you do at camp (activities, etc.)?
A: I went swimming, horseback riding, and fishing; made various arts and crafts; and bonded with my cabin friends. :)

Q: How was the food?
A: The food was really good. I don’t think there was a meal I didn’t like there. My favorite dish was probably spaghetti, because we tried to eat it with no hands. That was interesting.

Q: How many girls were in your cabin?
A: There were seven girls in my cabin, plus the six counselors.

Q: What were your counselors like?
A: Oh, man, our counselors were super sweet and caring, and they really took the time to get to know each one of us. I got pretty close to a couple of the counselors, which made it super hard to say goodbye. In all honesty, by the last day and a half, the counselors and the campers were sort of butting heads a bit. Let’s just say everyone in the cabin was a bit “sassy.” But at the end of the day, we still loved them to death. I thought of some of the counselors like the older sisters I never had.

Q: What was the highlight of camp? Were there any challenges or hard times at camp?
A: The highlight of camp was getting to know everyone from the green cabins :) For the first time ever, I finally got to meet people with similar blood disorders who know and understand what it’s like to get poked all the time, or to get lots of blood transfusions, or to take a ton of medications—to not feel judged or get bombarded with questions is just the best feeling in the world. To know you’re not alone and that there are other people going through the same thing is truly amazing. I feel somewhat blessed to have a blood disorder and to have met people who understand what it’s like and who can share a common bond. Another cool highlight was the day our cabin went boating/fishing. It was our cabin and one of the other green cabins, which happened to be one of the older guy cabins. I wanted to go fishing, yet all the other ladies wanted to go boating. So I was the only girl from my cabin who went fishing, and I got stuck with all the guys. But I also happened to catch more fish than any of the guys, which was pretty exciting. I caught four fish with a little help from my wonderful counselor, Kailyn, who I dragged along with me. There weren’t really any challenges or hard times at camp. I mean, if I had to pinpoint one thing, I think for me it would have to be not having contact with my family. I was a bit homesick at first, but that goes away.

Q: If a child or teen was not sure about going to camp (or a parent was not sure about sending their child), what advice would you give them?
A: Go! Go! Go! Seriously, you won’t regret going. It definitely is nerve-wracking going to a new place, not knowing anyone, but when you get there, you get so caught up in the activities and meeting people that you forget about nerves. The first day, you’re getting to know your cabin mates and the next thing you know, you’re leaving your new “cabin family.” It goes by so quickly, so enjoy every day of it.

Q: Are you planning to return to the Painted Turtle Camp?
A: Most definitely! I would love to go back as an LIT or maybe a counselor later. The experience there was really eye-opening and somewhat life-changing for me, so I definitely would love to get back there as soon as possible.

Q: Any other comments?
A: I really recommend going to this amazing camp. I guarantee that you’ll walk out with a smile on your face—how could you not? I met some of coolest people there that I hope I can stay in contact with for a really long time :)

Q: Can you tell me a little bit about yourself—age, hobbies, year in school, thalassemia type (and if you want, blood transfusion and chelation regiment)?
A: I’m 16 years old, I am adopted from Vietnam, and I’m a junior at Lakeridge High School in Lake Oswego, Oregon. My family, friends, health, school, dance, Harry Potter, The Hunger Games, Starbucks, and the NFL are the most important things in my life. On Mondays, Thursdays, and of course, Sundays, I love sitting at home, screaming at my TV, watching pro football. Go, Packers! I have e-beta thalassemia, and I am currently off blood transfusions, but I’m taking Exjade, which is oral chelation, and hydroxyurea.

Northern California Comprehensive Thalassemia Center
UCSF Benioff Children's Hospital Oakland
747 52nd Street, Oakland CA 94609   •   Phone: (510) 428-3347   •   Fax: (510) 450-5647
© 2003-2012 Children's Hospital & Research Center Oakland
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