The Girls!

Alexa Ponciano

Model & SurvivorNorthern CaliforniaPhotos by Lauri LevenfeldStory by Alexa Ponciano

When I met Alexa Ponciano on the set of one of my kids’ fashion editorials Social Bunnies, I was immediately struck by her positivity, light and zest for life. She had the energy and enthusiasm to match any model I had worked with in the past, and I could tell from the moment she spoke her heart was made of gold. Little did I know that at such a young age, she had already lived a lifetime of hardships suffering from a brain tumor and Celiac disease.

When I spoke to Alexa about coming on board to tell her story, the main reason she wanted to do it was to help any girl (or boy) out there suffering from the same challenges and hurdles. She wanted to be an inspiration and a ray of hope, she certainly is. Today, she tells her story and how her biggest obstacles gave her some of life’s most fortuitous gifts.

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When I was 6 years old, I was diagnosed with Celiac disease, a disease in which you can’t eat anything with flour or gluten. It was an extremely hard diagnosis at that age, as  I was always being invited to birthday parties which almost always included pizza and cake. Then at 8 years old, I started to have really bad headaches and at first we thought it was because of the Celiac disease. I got an MRI and we realized that I had a brain tumor. Within 4 days of finding the tumor, I had surgery and I was only in 3rd grade. Most people in 3rd grade worry about if they’re going to have enough recess time, I was dealing with so much more.

Right before surgery, I found out the doctors were going to have to shave my head, and it made me sad. I didn’t feel confident.

What made me really sad was how people who didn’t even know what I was going through, would make comments about my hair. Even though you shouldn’t care what people think of you or say to you, it affected me. It was hard because having my head shaved wasn’t my 

choice, I couldn’t help it. I remember one day after school I went with my mom to go pick up my brother, I was standing there with my mom and a girl in my class said to me, “You shaved your head! Ewww!” It made me feel awful because she didn’t even know what she was saying. I love my hair, so to have it shaved was very hard for me.

Think about this, how would you feel if you were in my position? And I said something about the way you look, how would you feel?  When you have health issues, the way you look is the least of your worries. You should never get judged for your appearance. I love to dress up, do my hair, and look nice, but there are times where I love to wear sweats and look crazy, and I shouldn’t get judged for it. I believe if you feel confident in what you’re wearing that is good enough. No matter how you look, short, tall, small or big, you are beautiful. The only way you are ugly is if you are mean. You are beautiful, when you are nice and have a kind heart.

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The tumor taught me a lot of things, it taught me that life is short. Make the time that you have in life positive and not a negative. I’ve learned that every day counts and to live life to the fullest. My motto is to live life to the max, because you never know when it will all be gone.

Having a tumor was hard, you can only do so much. But once I got back to normal I just knew, I was a lucky girl. I thought you never know what the future holds for us, so make the most of what we have. Instead of bringing each other down, let’s lift each other up! It especially taught me to love others and make them feel good when I can, I feel better when I put a smile on someone’s face or make them laugh. I loved when people did that for me.

Every day is a struggle knowing I can’t eat flour or bread, or hoping that my brain tumor won’t come back, but I always know I can give back to another person who is struggling with the same thing I struggle with. That is why I love doing walks for the Celiac Disease Foundation and raising money for the Brain Tumor Society every year. I hope one day I’ll be able to help make a difference in another person’s life.

My symptoms for Celiac Disease include severe stomach pains, constipation,exhaustion, severe irritability, and loss of appetite.

For more information on Celiac go this website: https://celiac.org/

For more information on brain tumors go to this website: http://braintumor.org/

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4 thoughts on “Alexa Ponciano

  1. So proud of you little one. You are growing up to be strong and compassionate, beautiful on the inside as well as on the outside. I wish you so much success in your life.
    Love you… Aunt Shirley

  2. Alexa,
    You are very special and brave to share your story. Your positive attitude is inspiring and always shared through your gorgeous smile and infectious laugh.
    I’m hoping life continues to give you reasons to smile.

    You are amazing Alexa and we are all so very proud of you.
    Love and hugs…
    Shellie

  3. In all that I read above, I must say that you are inspiration and motivation. Even though I dont know you but after all that you told, I can say that I red you all. Its very hard to share the story to the world, speacially health issues but you said bravely which shows you faced bravely and you are now.
    I saw you on instagram and flow you. But today when i red all this about you, I must say that your not only beautiful from outside but inside too.
    Alexa, keep doing your work and best wishes & prayer for you from my side.

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