Alexandria, Virginia — With the cost of a life-saving transplant often exceeding $800,000, most transplant families are unable to shoulder that financial burden. Children’s Organ Transplant Association (COTA) is a national 501(c)3 charity dedicated to organizing and guiding communities in raising funds for transplant-related expenses. In Alexandria, volunteers are raising funds for COTA in honor of transplant patients like local resident, Jessica Sue Fink.
Because Jessica has been diagnosed with Cystic Fibrosis, the transplant team at Inova Fairfax Hospital in Fall Church, Virginia, has recommended a life-saving lung transplant. Alexandria volunteers are raising $50,000 for COTA to assist with transplant-related expenses.
Jessica’s Story in Her Words
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 complete joy.
During that time, I was pursuing a degree in nursing and worked as a nurse assistant, working with the elderly. 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 very long and frequent 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 been so supportive and helped me 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 even 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. That was the very last thing I wanted to do…
But 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 whom I love, enabling me actively to contribute to society; I just want to be able to work again.
And I would love to see whales one day . . .
Transplant Costs and COTA
COTA helps transplant families avoid financial devastation. Transplant procedure costs range from $100,000 to more than $800,000. Once the transplant is complete, families face significant transplant-related expenses, including medication; transportation to and from the transplant center; lodging; and expenses while parents are out of work and often living with the hospitalized child far from home. These out-of-pocket expenses add up to tens of thousands of dollars annually for transplant families with lifetime totals often exceeding $1,000,000. In cases where a shortfall exists, COTA helps bridge the financial gap.
Jessica has asked for assistance from the Children’s Organ Transplant Association. The organization’s priority is to assure that no child or young adult is denied a transplant or excluded from a transplant waiting list due to lack of funds. One hundred percent of all funds raised in honor of patients assist with transplant-related expenses for a patient’s lifetime.
Contributions may be sent to the Children’s Organ Transplant Association, 2501 West COTA Drive, Bloomington, Indiana, 47403. Checks should be made payable to COTA, with “In Honor of Team Jessica Sue” written on the memo line. Secure credit card gifts are accepted online at www.COTAforTeamJessicaSue.com.
Additional volunteers are needed for this COTA community campaign. Individuals and groups interested in more information should contact Community Coordinator Joseph Adams at 202.957.1283 or firstname.lastname@example.org.