At Addison Bryan Foundation we recognize the negative impact that overwhelming financial strain can have on families who are facing childhood cancer. We understand that when families have to worry less about how to cover expenses they are better able to focus on their child’s treatment and recovery. Our mission is to offer financial assistance to families who are battling pediatric cancer and to promote awareness about childhood cancer. We also strive to support our fellow childhood cancer organizations in their efforts to gain funding for the research and development of a cure for childhood cancer. Together we can and will make a difference. No one fights alone!
Addison Bryan Foundation was created to honor our daughter Addison who was born with terminal brain cancer. Here is her amazing story.
Addison was born on June 30th, 2013 and appeared to be completely healthy. Her stats were perfect at birth and her first 6 weeks seemed perfect. At her 6 week check up she was sent to the hospital due to slightly poor weight gain. What was initially considered a relatively minor issue soon turned into a barrage of tests trying to determine the cause of the problem. After several weeks, many tests and an eventual transfer to UNC Children's Hospital she was diagnosed with a PNET brain tumor complicated with leptomeningeal spread.
Addison's tumor was the size of a golf ball when she was diagnosed at only 9 weeks of age. These types of tumors are extremely rare in infants. So rare that Addison was the 24th case of a PNET tumor in an infant worldwide. Her diagnosis was further complicated with a secondary type of central nervous system cancer called leptomeningial spread; which meant that cancer was free floating in her cerebral spinal fluid and eventually her entire spine was coated with a layer of tumors. Addison had 7 surgeries, 5 rounds of chemotherapy and months in the hospital. She began her treatment regimen at UNC which included having a G/J-tube inserted in her tummy for food and a shunt implanted in her skull to relieve pressure in her head from the growing tumor. After three months in the hospital she was taken home to be cared for by her very loving and capable parents who continued her treatment there.
Unfortunately after various treatment plans and 5 rounds of chemotherapy, the tumor was unresponsive and continued to rapidly grow. At diagnosis Addison was given a small chance of living 6 months. She ultimately survived for 19 1/2 months before she peacefully passed from earth on a most appropriate day, Valentine's Day, February 14, 2015. Addison was the epitome of love and chose to leave on the one day of the year set aside for love. She will forever be remembered on that day and everyday. We dedicate this foundation and our mission to our strong and brave little fighter who handled her painful and difficult journey with never-ending dignity and grace. She was and will always be an inspiration to us all. We hope to honor her by paying her beauty forward in giving to others.