Create Your Own Sunshine By Ava & Heather Garnett

On August 28th, 2007 I arrived into this world at 2:21 a.m. From what my parents tell me, it was a bit of a whirlwind in the days, weeks and months following my birth. At first my parents were just told that I had what only seemed to be bilateral elbow contractures, which really just means that my arms are bent and cannot extend farther than 90 degrees. My thumbnail, pointer finger and index finger appeared to be malformed as well.

As my mother tried to dress me into my cute “take home” outfit, it was then that she realized the struggle and challenges that I would face, in dressing and wearing clothes. Due to my elbow contractures that appear as webbing at the elbow, my arms are thicker and a thin pajama or shirtsleeve was nearly impossible to slip into.

Testing requested from the geneticist Dr. Pappas, at NYU Langone Orthopedic Hospital, came without answers. My diagnosis remained a mystery to both the medical staff and my family. This sent my parents on a mission doing as much research as they could about me on the internet googling my unique traits. They also searched many stores for the most accommodating pieces of clothing that they could find. They quickly realized that there were very few long sleeve choices for me. Because of all of this, my parents spent many sleepless nights thinking of how I could grow up to be as independent as possible, especially with dressing myself. Luckily, I was blessed with a strong willed disposition since birth!

During a feeding late one night, as my mother once again searched the web with my characteristics, she came across a photo of a thumbnail that looked exactly like mine. She immediately read through the website describing Nail Patella Syndrome and instantly knew my diagnosis. Although Dr. Pappas tested me for the Nail Patella Syndrome marker, it could not be identified through blood work. I was given the diagnosis solely on my physical characteristics. My parents were then told that the testing in the United States is often not sensitive enough to identify the gene mutation that I carried of the gene LMX1B.

I am blessed to have an older sister and a younger brother. My family and friends have always made me feel just like anyone else.

From a young age I always have loved fashion and dressing up. I also love music (Taylor Swift is one of my favorites!), softball, soccer, basketball, skiing, and ice-skating.

One afternoon my mom came across an article written by Kendra Gottsleben about the Runway of Dreams Foundation, a non-profit organization that works to promote people with disabilities in the fashion industry and advance the future of adaptive design and innovation. It described the importance of the organization’s mission and how thrilled Kendra had been to model in its first ever mainstream fashion show sponsored by Tommy Hilfiger. At the bottom of the article was a link that led my mother to the Runway of Dreams Foundation website. This discovery was life changing! That is because prior to this, it was extremely hard for me to express myself because I wasn’t confident in my own skin, or in many clothes. I avoided answering questions from strangers and even friends about myself, and most especially talking about Nail Patella Syndrome to others.

After reaching out to the Runway of Dreams Foundation’s founder, Mindy Scheier, I was offered the incredible chance to model a dress in their Second Annual Gala and Runway Show in NYC. While preparing to line up and take the stage on the night of the event, a rush of adrenaline came over me. Turning onto the runway and taking that walk was almost indescribable. I kept thinking that I was in a dream because it was such a magical moment that I didn’t want to end. Wearing the cutest dress that was perfectly tailored to fit me, that I was able to put on with ease due to the magnetic closures, gave me the energy to push my initial shyness aside and rock that runway. I felt both blessed and grateful.

The breakthrough that Mindy has made in the fashion industry by introducing clothes to better-fit people like me who are unique, has helped me find my own voice. I love to explain the importance of Runway of Dreams Foundation’s mission and how it is dramatically changing lives like mine for the better. And this has opened up so many other exciting doors! I was able to also build up the courage to speak about and acknowledge World Rare Disease Day this past year. The organization Global Genes ® generously donated hundreds of Blue Denim Genes Ribbons® that I handed out to assist in spreading awareness to the over 7,000 rare diseases identified worldwide.  My mom and I have also recently discovered the organization called SheLift founded by Sarah Herron that offers adventure experiences to “unite and motivate young women with physical differences.” In fact, we were recently invited to Park City, Utah for the first ever SheLift Mother + Daughter Ski Retreat! This will enable me to connect with five other girls who share similar physical differences– which is very exciting for me. With the help and guidance from the Runway of Dreams team and my parents, I also just signed a contract with Stellar NYC. My heart is just overflowing with gratitude.

Knowing that the fashion industry now acknowledges the differently-abled community, I look forward to these new and exciting opportunities and have become more confident in posing for pictures, talking about my love of fashion, and feeling joy about having access to adaptive clothing.

When I look through pictures posted online and notice the covers of fashion magazines, I hope to see even more and more diversity. Hey, you never know, maybe one day I might have the chance to grace a cover! I will continue to dream and try my best to achieve my goals in representing the differently abled community. I plan to be a strong, independent and courageous girl who takes chances.

My bucket list is expanding in leaps and bounds. In July of last year the marker for Nail Patella Syndrome was finally identified through a test I had taken, almost ten years later. I have never been more excited for my future. It is my hope that you will follow me on my journey!

16 Responses to “Create Your Own Sunshine By Ava & Heather Garnett”

  1. Trixie HennigOctober 31, 2019 at 1:27 am #

    My daughter was just diagnosed a couple of weeks ago with NPS. She is 10 and wants to meet someone else with NPS. She is a very outgoing girl who loves to be active and always has a smile on her face. She just underwent surgery on her knee for a complete reconstruction and her elbows don’t extend all the way. Kaylie would be delighted to have an NPS friend!!

  2. Marissa MeduriMarch 1, 2018 at 7:03 pm #

    Congratulations Ava on all of the amazing things you have accomplished ! Your determination, confidence and bravery are truly an inspiration to us all. Keep reaching for the stars- you will certainly reach all of your goals and fulfill all of your dreams . You are blessed with an incredible family and always surround yourself with good friends !!! You are a true beauty- inside and out …xoxo

  3. Marissa MeduriMarch 1, 2018 at 6:54 pm #

    Congratulations on all of your amazing achievements Ava! You have already accomplished things that some don’t achieve in a lifetime ! Your confidence , determination and bravery are an inspiration to all. Keep reaching for the stars- you can make all of your dreams come true and you have so many amazing people to help support you along the way! Xoxo

  4. Suleiman MahamedJanuary 14, 2018 at 3:12 pm #

    I have NPS and born prematurely at 25 weeks i used to be small when i was born ,but it all changed from the age of 2 rapid growth.Most people that are in the Netherlands are tall , but my height is 6 foot 4 because my dad and my granddad were tall , i never knew that i had NPS unitil the age 15 (3 years ago ) when i saw for the first time my elbow isn’t straight couldn’t extend it for 180 degrees My limit 150 degrees .I don’t have small kneecaps .None of my brothers or sister were affected

    • AvaJanuary 15, 2018 at 8:25 pm #

      I have NPS spontaneously as well. Thank you for sharing your story. Much luck and happiness in the future.
      -Ava 🙂

  5. Christina KrajacicJanuary 7, 2018 at 9:51 am #

    i also was born with NPS, inherited. at 31 years old, i completely understand that shopping can be tough with trying to hide the imperfections that makes us “us”. being engaged, i’m already nervous for that time to pick out my dress, considering i have really bad scoliosis/kyphosis. most important, i am me and i love me! stay confident, you’re beautiful inside and out! do you have a fb page? -christina

    • AvaJanuary 7, 2018 at 1:52 pm #

      Thank you from the bottom of my heart!
      ox
      Ava

    • AvaJanuary 7, 2018 at 8:25 pm #

      Christina, I do not have a Facebook page but I just recently started an Instagram page that is @avagarnett_official. Best wishes on your upcoming wedding!
      <3 Ava

  6. Roe and JoeJanuary 6, 2018 at 7:41 pm #

    Ava Rose…you are truly amazing. We who are blessed to know you are so proud of all your accomplishments. How wonderful that now people from all over the world can benefit from your courage, determination and love of life. You are a perfect role model and we are sure that you will continue to touch lives in a very special way, giving differently-abled children and their parents new found hope.

    • Ava GarnettJanuary 7, 2018 at 2:01 pm #

      Your support has been amazing! Thank you 🙂
      oxoxox
      Ava

  7. Joanne MansourJanuary 5, 2018 at 7:55 am #

    You go, Ava! We are so proud of you.

    • Ava GarnettJanuary 5, 2018 at 3:42 pm #

      Your encouragement means so much. Thank you!-Ava

  8. JorjaJanuary 5, 2018 at 7:31 am #

    You have such a wonderful spirit and tenacity Ava. I am sure nothing could ever hold you back! I live in Australia and have a 4yr old daughter with nail patella syndrome (spontaneous, not inherited). I very much hope she approaches life with your zest and determination!

    • Ava GarnettJanuary 5, 2018 at 3:46 pm #

      I am spontaneous as well! Sending much support and encouragement to your daughter! Thank you for your kind words.

  9. Ava GarnettJanuary 4, 2018 at 7:56 pm #

    Thank you for your kind words and support! It means the world to me.
    -Ava

  10. ElizabethJanuary 4, 2018 at 5:38 pm #

    We take for granted the little things that seem effortless…you are amazing Ava! Thank you “Runway of Dreams” for giving Ava and so many others the opportunity to feel independent and confident! Please keep us updated on your experience in Utah. Beautiful girl…great spokesperson for this effort!

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