Oley Profile - Alicia

In her fourth year of college, 21-year-old Alicia, is majoring in psychology with the goal of becoming a Child Life Specialist. Given her life-long experience with TPN, tube feeding, hypoganglionosis (a congenital motility disorder), and now a secondary diagnosis of Crohn’s disease; Alicia is more than familiar with the ups and downs of chronic illness, hospitalizations, etc. What makes her so special, though, besides her fun-loving, caring personality, is that most people would never guess she was anything but an average college student with lots of friends and a couple of interesting extracurricular activities.

Alicia is Oley’s youngest volunteer Regional Coordinator. In this capacity she networks with other teens and twenty-something members, mentors younger children and lends a sympathetic ear to their parents. She also helps with youth activities at the conference. In addition to the Oley Foundation, she is involved with REACH, an organization which helps teens and young adults with special health care needs prepare for a successful transition into adulthood; and is President of the Youth Advisory Council at the Children’s Hospital of Philadelphia, which helps to make changes throughout the hospital and is planning a Youth Leadership conference for teens.

In her spare time Alicia enjoys shopping, watching movies, hanging out with friends, reading, knitting and making jewelry.
Alicia and her parents have been to every annual Oley conference since their first, 11 years ago, where she met Roy (pictured with her), then a six-year-old, in the child care room. “We played a game of telephone and Roy came up with the best story. I thought Roy was a really fun kid, so we played together the whole conference and our moms became friends too. Now when we go to the conferences there is a large group of kids that have become friends.”

Alicia has found so much support through her Oley friends that when forced to choose between her high school graduation and attending the Oley conference, she chose the conference. “Oley is like a great big extended family. You get to meet people who are just like you.” She enjoys making new friends every year, and catching up with the regular conference gang. She is still good buddies with Roy, “Only now,” she confesses, “I’m not taller than Roy, he is taller than me.”