COTA for Julian's Journey

Our Story

Julian is an active 16-year-old entering his senior year of high school.  He loves playing basketball, soccer, volleyball, swimming and also loves running and traveling. For the past year, he has also enjoyed working after school and practicing for his driver’s permit. 

Recently after a seizure Julian was diagnosed with X-ALD, or adrenoleukodystrophy. This is a rare genetic condition that affects the brain, spinal cord and adrenal glands, damaging the membrane (myelin sheath) that covers the nerve cells in the brain and spinal cord. The only treatment to halt the progression is a bone marrow transplant that will consist of 9 days of chemo and his stem cells then being replaced by healthy donor stem cells. 

This process has required him to travel to one of only a few hospitals that are very knowledgeable of this condition in the nation to receive this procedure – the University of Minnesota Fairview. He will be required to stay 100 days post-procedure to ensure he is close to the hospital and receives the necessary and delicate care post-treatment. During that time, his parents will also miss work extensively, unable to work while hundreds of miles away from Kentucky. 

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.