Our Story

My name is Amanda.  I was born March 29th, 1987.  After countless tests over a three month period, I was diagnosed with Cystic Fibrosis (CF), which is a terminal illness.  

CF is a gene carried by both parents and both of my parents carried the same gene.  I happened to get both of the genes from my parents.  My mom had eight children and I am the second oldest, and the only child that was diagnosed with CF.  CF is a progressive genetic disease that causes persistent lung infections and limits the ability to breathe over time.  CF affects mostly the lungs, but also affects the pancreas, liver, intestines, sinus and sex organs. CF causes mucus to be thick and sticky; the mucus clogs the lungs over time and damages them. 

The life expectancy for someone with CF is 44 years old, although 55% of people with CF do not live past 18.  As a result of CF, I have a very weak immune system which makes me prone to infections that have consistently damaged my lungs over time.  CF patients eventually require a lung transplant in order to live.  

I’m 33 years old and I feel lucky to have lived this long, but unfortunately my time is coming to an end without a transplant.  With a lung transplant, I will be able to live longer. Not only will I be able to live longer, but I’ll be able to have a better quality of life; not needing to take breathing treatments every 4 hours, not needing to be on oxygen 24/7, being able to walk independently, etc.  

I have a wonderful, supportive family and am not ready to leave this world.  I am also engaged to get married to my best friend in November.  This lung transplant will prolong my life and allow me to spend more time with my family and allow me to walk down the aisle to marry the love of my life.  I would also love to go back to work and feel like I am a productive member of society. 

As most know, I live in Las Vegas.  However, in order to receive a lung transplant, I must make a temporary move to Arizona and reside in Phoenix before, during and after the transplant.  As you can imagine, the transplant procedure, relocating, recurring doctor’s visits and lifelong medication will result in high ongoing medical costs.  The recovery for a double lung transplant can take anywhere up to a year.  

I’m kindly asking for absolutely any assistance anybody is able to offer, whether it be financially to COTA, emotionally or by sharing my story with the world.  I understand times are especially hard right now and I genuinely thank you from the bottom of my heart for taking the time to read my story.  I sincerely appreciate your kind donations to COTA in honor of me which assist with transplant-related expenses.

The Children’s Organ Transplant Association (COTA) helps children and young adults who need a life-saving transplant by providing fundraising assistance and family support. COTA also works with individuals of any age with a single-gene disorder such as Polycystic Kidney Disease, Cystic Fibrosis or Sickle Cell Disease. COTA is the nation’s only fundraising organization solely dedicated to raising life-saving dollars in honor of transplant-needy children and young adults. 100% of each contribution made to COTA in honor of our patients helps meet transplant-related expenses. COTA’s services are free to our families, and gifts to COTA are tax deductible to the fullest extent of the law.