Hi and welcome to COTA for Team Jessica Sue!  Thank you for coming here.  I was asked to write my story, so here it is:

I was born weighing just 4 pounds 12 ounces, and was immediately diagnosed with a genetic disease called Cystic Fibrosis (CF); CF is a disease that causes the body to produce excess thick, sticky mucus.  This mucus clogs and interferes with the function of organs, such as the pancreas, liver, and lungs.  Increased mucus in the lungs makes us more susceptible to bacterial infections, which damage the pulmonary tissue.  Eventually, the damage becomes so severe that the lungs no longer function.

In the mid-1980s, few treatments were available for CF patients, and medical understanding of the disease was limited, so physicians gave my parents a grim prognosis that I was unlikely to survive beyond the age of two.  However, as time passed, my health did improve, surpassing doctor expectations.  Aside from having to take sometimes over 30 pills a day, daily breathing treatments, and regular doctor’s visits, I had a fairly normal childhood for a military brat.

Spending school-aged years moving around as a military family, and hanging out with my younger brother, my loving and supportive parents encouraged me to be active and not let my ailment hold me back in any way. I earned a black belt in Taekwondo, learned to play fast pitch softball, basketball, the clarinet, and ran cross-country in high school.  I also always loved being surrounded by nature, hiking in the mountains of Colorado, playing on the beach, or simply taking an evening stroll around a park. I still do so when I can. 

Even though I was told that I could not have children, I actually gave birth to a little Jedi (read: boy), who has shown me many episodes of Star Wars and just how wonderful motherhood could be.  A joy.  I became a nurse assistant working with the elderly, while pursuing a degree in nursing. While I had a love and passion for this work, my Cystic Fibrosis finally caught up and I began to have lung infections that required I.V antibiotics and long hospital stays.  

After coming to terms with my medical situation and long discussions with my medical team, I was forced to decide that it would be best to leave nursing – my passion, and to begin work as a barista at Starbucks.  It is there that I met my best friend and spouse, who has so supportive and helpful to remain positive through the many challenging changes associated with CF.  

Unfortunately, my lung infections persisted, requiring more frequent hospital stays, and I have struggled to maintain my health.  Quality of life deteriorated to the point that I cannot do the most basic things without struggle; without oxygen support.  Even vacuuming our small condo is a challenge. Eventually physicians informed me that I had to cease working completely and apply for disability. As my quality of life continued to decline, I agreed, with the support of my family and doctors, that it was time to list for a double lung transplant.  The cost of transplant and the expenses after the procedure are enormous, even with insurance. That is why we have joined with COTA to raise funds in honor of Team Jessica Sue, to help lessen the financial burden and give me/us a fighting chance.  

Thank you for reading my story.  It is a personal journey that I wanted to share with you.  My hope, my dream is for a successful outcome that, following the lengthy recovery period, enables me to have a better quality of life – an extended life, with those that I love, enabling me actively to contribute to society; I just want to be able to work again. 

I would love to see whales one day . . .

That is for another posting.

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 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.