Immune Disease | Family Stories | Meet Emma’s Family

Note: This interview features a person with Primary Immune Deficiency (PI). It was not written by a healthcare professional and is not meant to replace the expert care of a qualified physician. Please consult your physician with any questions you might have about your health.

I first came to know Celina and her mother, Gioia, through the Jeffrey Modell Foundation. Celina had a school project to do and had decided to focus on Primary Immune Deficiency (PI). This was a personal choice, since Celina has Common Variable Immune Deficiency (CVID). After years of trying to hide it, she felt it was time to "own" it. Because she had a difficult time obtaining a diagnosis, she wanted to increase awareness of PI, with the hope that others could be diagnosed earlier.

After hearing her story, I asked Celina if she would write a book about her experience with PI. The result is Celina's Story. It is a book full of insight from a wise and talented young adult.

- David Bond, Baxter Sr. Product Manager, Antibody Therapy

David: I want to ask you about your creative side. You are a wonderful artist. You take beautiful photographs and your drawing is amazing. Where did you learn photography and drawing?

Celina: Well, actually, my creative side comes directly from my mom! I never took photography lessons and I tried taking art classes, but they never worked for me. I kind of like doing my own thing, and not having to listen to what people tell me to do when it comes to art! In all my photographs I try to portray some emotion, whether its joy, simplicity, anger, etc., especially in pictures of nature!

Celina: Yes! I'd love to take a clothes design class sometime in high school. I've recently been very into fashion and clothes. However, I think it is key to learn the basics and evolve into my own unique style of art before that.

David: You are very athletic, too. How long have you been skiing? And when did you start crew?

Celina: I grew up skiing. It's a big sport on my dad's side. I do admit that I don't ski as much as I used to though. Although I love the sport, I'm kind of scarred from a past experience. When I was 10, my dad, my grandpa, my brother Payson and I went on a ski trip. It was amazing until I had a horrible crash after flying off a mogul, and tore a ligament! I'm more cautious when I ski now, but I can still never pass up an offer to ski a black diamond! However, crew is a totally different subject. I started crew in the spring of 2007, and from then on I have been in love with the sport. I actually never would have known what the sport was if my mom didn't do it during graduate school. Crew is one of the hardest sports I've ever done, but the feeling of rowing when the sun rises in the morning is indescribably beautiful.

David: I know that you travel a lot with your family and that you go to summer camp, all the things a "normal" kid would do with their family. Are there ever any issues or problems that come up related to PI when you travel or are away from home?

Celina: Aside from that one incident at camp a couple years ago (details are in the book, Celina's Story), I have never had any issues related to PI come up when I've been away. Sure, I might have had a minor headache or two, but they went away eventually. I'm hoping it will stay this way, because I love traveling. However, I really want to travel to Africa and India, but this presents more of a problem for me. Due to the immunizations, access to healthcare, and the possibility of disease, my parents and doctors are not too keen on the idea yet; but I hope I will be able to travel there in the future!

David: Tell me about the Teen Spirit Award you received at your eighth grade graduation. That must have really felt great.

Celina: Wow. I don't know how to describe it. When they called my name in front of all the middle school to come take my award, I almost screamed. A month before graduation, when we voted for whom we wanted to win, I was sure it wouldn't be me. I didn't have a lot of good friends at Sacred Heart back then, and yeah, I felt like quite an outsider. I was so happy walking across the grass to receive my silver plate saying CSH Class of '11. After the ceremony, when everyone went back into the school to eat and say goodbye, I was too nervous to linger! When people congratulated me on winning the award, I smiled anxiously. I mean, the feeling of winning was great, but I was terribly embarrassed by all the attention! After grabbing a cookie, I tugged my mom to the car and drove back home.

David: Do your friends understand what it is like to have a Primary Immune Deficiency disease?

Celina: Yes and no. I mean, two of my best friends have been multiple times to my infusions, and they understand the basics, but could not tell you every detail about it. If you asked one of my friends what I had, they'd probably say, "a disease that makes her not produce enough antibodies, so she needs to get an IV of donor antibodies once every month," or something like that. For the most part, they understand if I'm sick for a few days, and have headaches randomly. However, not all my friends know about my condition. It's not that I don't want to tell them, but it has just never come up, you know? I am really open about me having PI though. I don't usually hide the fact that I have this disease. Although it can be annoying having Primary Immune Deficiency, I feel like it defines who I am, and I wouldn't have turned out to be who I am now if this didn't come into my life!

Celina: I cannot begin to explain how life-changing the trip to the Dominican Republic was. It was amazing to give of myself to families in need. The children I played with during the day, and the old women I met and chatted with while planting gardens were some of the most grateful and warm people I have ever met. The language boundary didn't have any effect on me. A smile and laughter is all I needed. Being in the D.R. let me leave the material world behind, and come to know myself deeper spiritually, and as a person. For many years I have not felt able to give back to all the people who have helped me. This experience opened my eyes to how hard life is for others (especially because, for the most part, they have no healthcare), and it definitely let me "pay it forward." I cannot contain my excitement to go on the trip again this year with my high school youth group, and am overjoyed that I will get to see all my Dominican friends!

David: The book you wrote is so good! I really like the journey the reader takes as they follow you through grade school, middle school, and into high school. The highlight for me was when you came face to face with PI and decided to tell the world. Was it difficult to write the book?

Celina: Thanks David! And yes, it was difficult writing the book. Not only because I needed to relive horrible memories I had from sixth grade, but also because I wrote it during the summer! I really wanted to get my story out, but I also wanted to go hang out with my friends and go swimming. My mom was the main reason I kept on writing, even when I was dying to go to the movies, or frolic around in the flowers. She taught me that I made a promise to write this, and I had to follow through. For those who do not know me, I tend to be a bit of a procrastinator.

Celina: Right now, I'm more worried about getting into a good college than anything else! There is so much pressure for me to get good grades, and I really want to go to a school where I click. I have way too many dreams for after college, I don't know how I can fit them all into my life! Here is a brief taste of what I want to be in one word; an artistic/horseback rider/zoologist/mother/pastry chef/designer/world traveler.

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