Olivia Daniels

(This blog is the second part of Olivia Daniels’ story. You can read the first part here.)

In the summer of 2019, Olivia Daniels and her family returned to the National Foundation for Ectodermal Dysplasias (NFED) Family Conference for the first time in a decade. They were not just looking forward to seeing old friends and making new ones.

Olivia shows off some of the many Cool-Dannas she and her mom have made to give away to others and raise awareness of ectodermal dysplasia.

Twenty-two-year-old Olivia wanted to give back.

Olivia set a goal to donate 100 Cool-Dannas to the NFED to help kids/adults like her who couldn’t sweat. Cool-dannas are cooling bandanas that she and her mom, Kathy, craft to help others stay cool.

For people who have ectodermal dysplasia, such as herself, Cool-Dannas are a great way to help keep cool. She was excited to exceed her goal when she donated 150 Cool-Dannas to NFED families.

“I think I helped other families by sharing my story and educating others about my syndrome. I also think I helped by just being an example of how to embrace my differences and enjoy being unique. I also loved being able to donate my Cool-Dannas. And I hope that will help a lot of people stay cool and enjoy activities a little more than before.”

Operation “In Full Bloom”

The second platform Olivia launched as part of her participation in pageants is called Operation in Full Bloom in which she hands out hair flowers as a way to spread acts of kindness and promote acceptance.

Olivia is in Full Bloom with many of the beautiful hair flowers she and her mom have made.

Because of her syndrome, hypohidrotic ectodermal dysplasia, Olivia’s hair hasn’t ever grown that much. But this mom and daughter team has always found creative ways to make her hair fancy. When she was little, she wore fun hats and headbands. She tried using wigs to fit in with her peers but found that they made her feel hot and itchy.

“As a ballet dancer, a bun is very important, and finally, her hair grew just enough for a teeny tiny bun, which we accessorized with hair flowers,” Kathy said. “Wearing hair flowers became Olivia’s signature look. And she loved to share her hair flowers with friends, old and new.”

Olivia says that when she shares her flowers (which she and Kathy make) with others, she feels like she’s sharing her friendship and spreading happiness. She’s also spreading the message to embrace your own special uniqueness. She understands what it’s like growing up looking and feeling different. But she embraces her differences.

I like being unique and I wouldn’t want to change a thing about me.

– Olivia

The Power of Self-Advocating

Olivia used her time on the National Miss Amazing stage to tell the world about the NFED and her syndrome. After one speech, another family approached the Daniels and said they thought their neighbor from North Carolina might have the same syndrome – and they would return home to tell them about the Olivia and the NFED.

Olivia continues to get more experience in using her voice. She shared information about Operation Cool Danna and Operation In Full Bloom at the 2019 NFED Family Conference.

That’s the power of having the courage to speak up.

“At first, I was surprised that strangers would want to hear my story. But then I realized that by sharing my story, it helps others understand. And people actually want to understand. I feel like I even inspired others who were going through their own health struggles and I inspired them to share their stories as well.”

Her Sharing Spirit

Whether she’s choreographing a new dance solo, creating characters and their costumes for her fiction book or hosting “Olivia’s Trivia” on Facebook, she’s sharing her spirit and unique qualities.

Olivia even shared her story with her legislators to advocate for the Ensuring Lasting Smiles Act (ELSA).

She also keeps giving back to the NFED.

“My mom and I participated in the virtual NFED Advocacy Day. It felt great to speak up and share my story with legislators while advocating for the ELSA (Ensuring Lasting Smiles Act) bill. Over the summer, my mom and I made over 300 Cool-Danna’s that I can’t wait to share with my NFED friends when I see them again!”

Olivia’s shining light and bright spirit give us all the amazing power of hope, for this season and this life.

“Self-advocating is important. No matter how little you are, it’s important to start learning about your syndrome so that you can begin to advocate for yourself. Embrace your uniqueness. Do what feels right for you. If you want to wear a wig, then wear one. If you don’t like it, it’s ok to not have hair. And find a way to express yourself. Also, follow your dreams and don’t let anyone stand in your way. We all go through struggles but don’t let them define you. Be your own kind of beautiful! And, you will be amazing!

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4 comments on “Finding Her Voice and Rediscovering Her Tribe”

  1. 1
    Jonathan on December 9, 2020

    Our daughter was the recipient of one of those Cool-dannas, and we’re so grateful. You are someone we look up to as an inspiration!

    1. 2
      Jodi Edgar Reinhardt on December 15, 2020

      Hi, Jonathan. We are glad that you daughter got one of the Cool-dannas! Olivia is a generous soul and we’re glad you both connected. ~ Jodi, Director, Marketing and Communications

  2. 3
    Amber Brubaker on December 12, 2020

    Thank you for sharing your inspirational story. I am going to share it with my 10 year old daughter who has HED.

    1. 4
      Jodi Edgar Reinhardt on December 15, 2020

      Hi, Amber. We’re glad that you enjoyed Olivia’s story! We hope that your daughter enjoys it! ~ Jodi, NFED, Director, Marketing and Communications

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