James Edwards, a junior at Salesianum School, will serve as Ambassador for the 2020 Rare Disease Day at Nemours/AI DuPont Hospital for Children.  For the next year, James will raise awareness and funding for rare diseases by sharing his story, and helping others with rare diseases realize that they can lead exceptional lives.

Fourteen years ago, at the age of two, James was diagnosed with Systemic-Onset Juvenile Idiopathic Arthritis (“SJIA”).  SJIA is a chronic auto inflammatory disease that affects less than 1% of the U.S. population. SJIA is characterized by uncontrolled fevers, a distinctive rash, inflammation of numerous joints (and even organs), as well as daily fatigue and pain. His treatment over the years has included frequent admissions to the hospital for intravenous infusions to suppress his immune system, prescription medications, and countless visits to physical, occupational, and aqua therapy. Sometimes his symptoms made it hard for him to move, making even everyday tasks a challenge.  Like many rare disease sufferers, there have also been times when he missed out on school, activities, and family time. James also experienced disappointing relapses, including one this past summer.

James’ outlook remains positive, and throughout his challenges, finds many blessings.  He has had the opportunity to spend time with remarkably resilient, tenacious, disabled children and young adults, and recognizes that each person has special talents and gifts. He also knows that disabilities can, in fact, be a source of strength. James has also been cared for by world-class physicians, nurses, therapists, and other staff who made him feel safe, respected, and loved, and lived by the Nemours’ motto: “Your Child, Our Promise”.

James spends his summers and Saturdays helping other kids heal, as a teen volunteer through Nemour’s Office of Volunteer Services.  His commitment to leading a different, exceptional life has given him a sincere desire to affect the world around him in a positive way.  He is also a mentor and a coach, Boy Scout pack leader, President of Salesianum’s National Honor Society and Salesians Without Borders Club, a Eucharistic Minister, a graduate of the Governor’s School for Excellence, a member of the YMCA of Delaware Youth Leadership Committee, and recently represented the state of Delaware at an international youth leadership conference in London, England.  Last fall and spring respectively, he completed service projects in El Paso, TX and White Sulphur Springs, WV. This spring, James will be traveling to San Salvador for another service project.

James’ attributes his commitment to serving community directly with the quality of care he received at Nemours/AI duPont Hospital for Children, as well as recent research advances in the treatment of SJIA.  According to James, “Without appropriate management of my disease, I would not even be able to think about a future career in service, because I would be too sick to reach my potential.  In this, I know I have been truly blessed. However, many other children with rare diseases in the United States and worldwide are not so lucky.”

Nemours and Nemours Biomedical Research are once again partnering with Health Occupation Students of America (“HOSA”) to promote awareness of and seek funding for additional research for the early diagnoses and treatment of rare diseases.   During the next four months, Nemours will sponsor programs which will culminate with a special event on February 28, 2020 in the Fusco Atrium to recognize Global Rare Disease Day. Additionally, for the first time, in an effort to reach a wider and more diverse audience including the peers of many of the young people Nemours treats, there will be an online social media-based campaign to raise awareness for rare diseases: #NEMOURS RARE.

Please consider joining James to raise awareness for rare diseases and research, so that more young men and women can go on to lead different, exceptional lives.