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May. 5, 2016

TOPIC: Featured News, Patient Stories

Noah Victoria: 2016 Rare Impact Award Honoree

Posted by Christina Jensen
Noah @ NIH

Noah Maria Victoria wrote her first poem at the age of 13 or 14 as a homework assignment.  She composed “The Window,” a metaphor for her journey and countless trips to Children’s Hospital and the National Institutes of Health clinical centers.  “My car window has been my companion the entire time,” she says. NIH # 3  

Today, Noah is an 18-year-old Positive Exposure Ambassador who blogs and contributes poetry to the PEARLS Project ,a groundbreaking educational program for students, teachers, and healthcare providers to learn about the real life experiences of individuals and their families living with genetic, physical, cognitive and behavioral differences.  

She has taught nearly a generation of medical student and residents not only about her disease but about what it means to live with a rare disease, and to approach life with humor and a positive attitude.

As an advocate, she is a member of the Running for Rare charity marathon team and hosts a booth at the NIH for Rare Disease Day, representing the team and its effort to support NORD’s Undiagnosed Program and pay for out of pocket expenses for patients and families enrolled in the NIH Undiagnosed Diseases Program. Recently, she rallied adults in her church community to call their congresspersons and urge them to vote “yes” for the 21st Century Cures Act.Rare Disease Day 2016

Noah is a very tall 4’8” in every sense of the world.  Born premature, she was diagnosed at 6 months of age with Abetalipoproteinemia (Abeta), a rare genetic condition that results in a malabsorbtion of fat which leads to a number of complications. She stopped growing at the age of 13.  As her mother says, “She is missing this tiny little protein, and the importance is so massive.” Noah also has unexplained symptoms of debilitating dysautonomia, and cystic changes to her bones that facilitated her enrollment in the Undiagnosed Diseases Program. Frequently in pain, she fights to make an impact for everyone fighting a rare disease.RDD #4

“I want people to know about rare diseases,” she says. “They are just as hard as common diseases.  There is no cure for it, and no real ending to having a chronic illness.  You fight it every day.  I want people to know because they should try to help.”

She continues, “I use my work to show that we’re just like everyone else. My goal is I want to improve education around rare diseases.”

Noah’s poem “The Tree” will be featured this year in the Children’s Inn “Book of Hope” provided to donors to this home-away-from-home for pediatric patients and their families being treated at the NIH Clinical Center.

“What I want people to know is I’m not giving up.  It is not an option for me and I believe it holds true for all of us with a rare disease.”

Noah went on to say that, “We must stick together so rare diseases can be known all over the world.”

“The Window” 

by Noah Maria Victoria

The window well traveled always by my side,
my companion through the darkest of times.

The fog that lifted in the air
ran away once the eyes caught glimpse of light.

Hope and Courage crossed the street,
I knew then that I was not alone.

NORD is honored to tell Noah’s story as part of its 2016 Rare Impact Awards.
Read the stories of all of our 2016 Rare Impact Award Honorees here.

27 Responses to “Noah Victoria: 2016 Rare Impact Award Honoree”

  1. Rhoda Blade-Charest says:

    My husband, Omar Akchurin, and I met Noah when she was about 2.5 years old. She had been approved to receive her very own special wish through the Make-A-Wish Foundation and we were lucky enough to be her wish-granters. As a young girl, her wish was to go to Disney World and Noah and her Mom, Gisela, and Dad, Carlos, spent a wonderful week in Florida. We have continued to stay friends with the family all these many years and consider them one of our closest friends. They are a wonderful family and do everything in their power to give their daughter, Lovely Noah, the best life possible. We love them all dearly. Noah is a very special child sent from God to teach us all so very much about rare diseases and how to conquer them.

  2. Linda Pixton says:

    I just got this. Oh Noah how beautiful you are. I love you and pray for you everyday. You are one of the strongest and faithful people I know.

  3. Saira Moini says:

    BRAVO and CONGRATS to you, dear Noah!!! I’m sitting next to your very proud uncle Don (you know him by your own special nickname!), and I’m so wow-ed by how you live your life, by your courage and determination and humility — and I’m really inspired. Great to watch you receive the NORD award — hooray! More power to you, young lady! By the way, we colleagues/friends of your uncle Don think he is the BEST and so are your cousins (his kids). Onward and upward, Saira 🙂

  4. Michael Zoosman says:

    Congratulations, Noah! I am so sorry I missed the live feed, but I was very happy to read this article, to learn even more about you and to read your inspiring poem. You are truly blessed and a blessing to all, both in the Rare Diseases community and in so many other arenas. As we say in my circles: “mazal tov” to you!

  5. Alice Watson says:

    From the age of 6 months to 19 years old I would say you have most certainly educated the medical community about your rare condition. Thankfully the suffering you endure and sacrifices you make are met by friends “HOPE and COURAGE”! Love you, Aunt Alice

  6. The Hogenson's says:

    Dear Noah,
    Your faith is an example to all of us, and your courage is an inspiration. Even with everything you face on a daily basis, your love and compassion know no limits. We thank God every day for the blessing and gift of knowing you.
    We love you,
    Aunt Cathy, Uncle Dave, Matthew and Steven

  7. Mariaelena. Vega says:

    Big shout out to you Noah Victoria. I will forever be in awe of you. You will have always have a fan in Miami. I am sure your speech will knock them out of their seats. Much love tia Gorda

  8. Mariaelena Vega says:

    Wow. Noah Victoria this is fantastic. I an very proud of you. They could not have chosen someone with a better or more uplifting attitude on life than you. I am sure you will knock them out of their seats . much love tia Gorda. Your biggest fan in Miami.?

  9. Mary Posey says:

    Oh, Noah. God is so blessed to have you on His Team!! As we all are. When I get discouraged or grumpy about my aches and pains, I only have to see you and realize that your faith is so strong and mine so weak at times that I need to step back and count my blessings. I am proud to know you. Blessings and love, Mary

  10. Denny and Tracy Leclerc says:

    As we have watched Noah grow up with her Rare Disease we have witnessed her Bravery, Strength, and Unconditional Faith. She is such an inspiration to our family and has shown us that with Love and Devotion you can survive through anything. We feel so Blessed to be part of her family…We Love you Noah..Denny, Tracy, Chantel, Jean-Luc and Christina Leclerc

  11. Don Mueller says:

    You are an inspiration for hundreds of men at the Greensville Correctional Center. Your work with the Kairos Prison Ministry has given these men hope and first hand experience in Christ’s love….you answered Christ’s call: “…when I was in prison, you visited me….” What an ambassador of Christ’s love you are to everyone you encounter.
    We love you so much,

  12. Nancy Waskiewicz says:

    Sweet Little Noah,
    There is nothing small about your strength and courage and the inspiration you are to all who know you. There is nothing small about the love you give and inspire in others or the positive influence you have on this world. Congratulations, Noah, and God bless you for the gift that you are! Love from “Aunt” Nancy

  13. Mary McILvaine says:

    It seems my comment did not go through. “Noah, my friend and fearless Ambassador for Christ, your Lord…..I admire your relentless fortitude in ‘carrying your cross’, sharing with all your own fight with a rare disease along with working for a cure for others, an eternal cure…by your witness of faith. When you look in a mirror (instead of the window), see the beautiful girl Jesus loves and died for! Your life matters xxxooo

  14. Mary McILvaine says:

    Noah, my friend, and fellow missionary in the building up of the Body of Christ; I am amazed at your resiliance and determination…..your faith and fortitude while still carrying your own “thorn in the flesh”. Truly, “God works all things together for good for those who are called according to His purpose!” Rom. 8:28 Let your light shine on in the darkness so others may see His reflection in you. Look into the mirror, instead of the window….He made you beautiful!!!!!!
    you can see the work of God!!!! xxxoooo

  15. Aunt Ginger says:

    Noah–I am humbled that you call me Aunt and are my friend! I hope to live up to your standards some day! You are a living miracle and as such are a wonderful example and inspiration to us all! Much, much love and congrats!

  16. JC & Brenda says:

    We are so proud of you! We wish you the very best! You are truly a beautiful Angel! We support you 100% in all your endeavors and are your biggest fans. : ) XOXO

  17. Joe Mills says:

    Noah may be missing a tiny protein, but God compensated by giving her a whole lot of love which she shares with all she meets. She not only advocates for rare diseases, but also is involved with her family in prison ministry, housing in Nicaragua, and other ministries as well. God has truly blessed us with this rare young lady! Love you Noah. Tio Joe

  18. Joe Mills says:

    Noah may be missing a tiny protein, but God compensated by giving her a whole lot of love. She not only advocates for rare diseases, but also is involved with her family in prison ministry. God has truly blessed us with this rare young lady! Love you Noah. Tio Joe

  19. Richele McLeod says:

    Hi Noah, You are an amazing example to all those who are blessed to know you. I am 66 years old, but you, at 18, have learned more about facing life’s challenges with faith and hope than I will probably ever know. I pray you always feel God’s love and abundant grace as you travel your journey. Sent with much love, Richele & Elroy McLeod??

  20. Liz Snyder says:

    Felicidades Noah, eres una mujer muy especial, sos escogida por Dios. We are so proud of you. Love you and God Bless you,
    Liz Snyder

  21. Shelia M. Vallot (Aunt Bubbles) says:

    I am very proud to be a part of your extended family. I am proud of your accomplishments. When I am in pain i also think about you. and it helps me. Noah you are my hero. Our God is Awesome. I love you Noah.

  22. Monica Barnes says:

    Words can not express the impact you have on my heart, you have shown me more courage than I have ever known, you my sweet Noah have been a blessing from God and His light truly shines through you for the world to see. I love you dearly ,Aunt Monica

  23. Tina Svenson says:

    Congrats from all your new Karios brothers, and all the new Aunt & Uncles
    GOD bless you and your family
    Love Tina Svenson

  24. Joann Scanlan says:

    I am so proud to be a friend of Noah!

  25. Gisela and Carlos Victoria says:

    This is for all who are battling RARE DISEASES !
    We have been humbled by YOU.
    Determined to grab a hold of every moment,
    graciously giving,
    loving without limit,
    sharing your journey,
    relentless fortitude,
    There is not one inch of our being that you have not influenced,
    and for that We have grown.
    We will never stop thanking GOD for the gift of you.
    Nothing is more BEAUTIFUL than COURAGE !
    So very proud of you Noah Love Mom and Dad

  26. Rita Leclerc (Tita) says:

    I am extremely proud of you! I remember when someone asked you if you had 1 wish what would it be? You had to think and the person asking you said “wouldn’t you wish your disorder gone?” You said, “if I did that I would not be the person I am now.” Your faith will take you to the stars and beyond – keep shouting!