14 inches by 11 inches
Printed on quality heavy weight acid-free matte paper.
Signed and dated by artist Nicole Troup for authenticity. Matte and frame not included.
Please allow up to 10 days for shipping and handling. Shipped in a tube package.
My daughter Noah is a very tall 4’9″ in every sense of the word. She is 21 years old, and she may look like a healthy young adult woman on the outside, but the inside of her body is not. She was born with a very rare metabolic genetic disorder with no cure called Abetalipoproteinemia that results in malabsorption of fat including fat-soluble vitamins A, D, E and K. which leads to a number of serious complications. She is missing this tiny protein, and the importance is so massive, it is life changing.
She has been going to (NIH ) National Institute of Health in Bethesda Maryland since she was 2 years old. This was a difficult disorder to diagnose but we were blessed to have a wonderful group of doctors that saved her life. In the past 4 years her health has been declining with unexplained symptoms of debilitating dysautonomia, and cystic changes to her bones. Due to this, she is also currently under the Undiagnosed program at NIH.
Frequently in pain, she fights to make an impact for everyone fighting a rare disease. There is no cure for it and no real end in having a chronic illness, she fights it every day. She wants people to know she is not giving up, it is not an option for her.
It has been difficult for her being a young adult and not being able to really participate in what most would consider a life. but she tries to move forward in reaching her dreams of being a poet, writer, playwright, and blogger. She keeps firm in her faith and knows that God has a plan for her.
Noah wrote her first poem at the age of 14 years old as a homework assignment. She composed ” The Window ” a metaphor for her journey and countless trips to Children’s hospital and NIH. She told me that the car window had been her companion the entire time.
God has given her the ability to express herself and inspire others through the written word. She has to date written over 137 poems and has witnessed in many church events. She will not stop writing, always grasping inspiration from all the good and the bad of this battle.
She thanks God for giving her the strength to face all the struggles that come with having a rare disease. Her illness is very debilitating, but a strong faith and the gift of writing that God has given her, she can tell her story. This is something she wrote that gives you a glimpse of who she is ” In passing, we go upon our human nature to always stay in balance. We hesitate to see beyond, but it takes an unforeseen circumstance to force us to see. I want to be that force, giving testimony with great exuberance and exhibiting my imperfect life. I do not think I can wait for the world to figure it out. I am perpetual in my stance to enlighten their hearts. Hope and courage have truly crossed the street and I know that we are not alone. ” …….Noah Victoria
For more information about Abetalipoproteinemia, other rare diseases and undiagnosed please check out :
National Organization of Rare Disorders ( NORD ) www.rarediseases.org
National Institute of Health ( NIH ) www.nih.gov
To follow Noah’s Spiritual and everyday living with a rare disease check out her new blog :
|Dimensions||16 × 3 × 3 in|