For most aspiring thespians, the stage is a place to hone their craft and to improve their performances.
However, for Cecelia Egan – a freshman at Riverside (Rhode Island) St. Mary Academy-Bay View who was chosen the recipient of the NFHS’ 2018 National High Heart of the Arts Award – it takes on additional meaning.
Diagnosed at age five with Friedreich’s ataxia, which limits her mobility and confines her to a wheelchair, Egan has never let that stand in the way of her love of theatre. Instead, she has embraced her affliction and fervently pursues the unbridled joy of performing on stage.
In recognition of her many accomplishments, Egan will receive her award June 29 at the NFHS’ 99th Annual Summer Meeting in Chicago, Illinois.
Since fifth grade, Egan has been in countless theatrical productions as a member of The Bay View Players. In those shows, she seamlessly integrates herself into the cast without calling attention to her need for assisted mobility. At first blush, her wheelchair seems like an extension of a character she’s playing. Then, with assistance from fellow cast members or her self-appointed aide, she’ll often abandon it in favor of propping herself up on set pieces such as a piano, a sleigh or a collection of trunks.
“Someone usually helps me on stage,” Egan explained. “They just ‘push me there.’”
When Egan started in theatre, she was assisted by a school-provided aide. However, a few years ago, she made the decision to go to fellow members of The Bay View Players to ask for only the specific help that she needed. In addition, 2010 St. Mary Academy-Bay View graduate Michaela Ferreira stepped in to assist by attending all of Egan’s rehearsals and by helping accommodate her needs and stage transitions.
“During the first year, seniors would help me,” Egan began. “As the years went on, I needed more help. That’s when Michaela came back to help me. I immediately felt comfortable with her. She gets me; she knows the ‘true me.’ I feel pretty special that she comes back to help me because she has a busy life and she’s a teacher, and she still comes back to help. It’s pretty cool.”
“Because of my involvement in the performing arts while at Bay View, Director of Performing Arts Christine Kavanagh asked if I would like to come back and work with Cecelia and, without hesitation, I agreed,” Ferreira said. “Since our first year working together, I have volunteered every year knowing I had the opportunity to work with Cecelia. We formed a wonderful relationship, and I look forward to each show with Cecelia! She is the bravest person I know.”
However, none of that might have been possible for Egan absent the vision of Kavanagh in incorporating her needs.
“Cecelia Egan! A tour de force; a young woman of courage and strong will; someone who knows her own strengths and weaknesses, and keeps right on truckin’,” Kavanagh said. “For whatever reason, I don’t see her wheelchair. I truly respect her work ethic and her positive attitude. She seems to glide through her stage space, as well as her daily classrooms. Whether it be Theatre Improvisation Games, a student theatrical production, or a musical extravaganza, Cecelia beams! She is in her element and she seizes each and every moment.”
“When I’m on stage, I try to show the audience what we’re doing in a scene. It’s serious sometimes,” Egan said. “It’s like an escape – to get away from my problems in life. You can be someone else and I like that. When I’m tired, I’m like ‘Why am I doing this?’ Because I love it so much.”
Ten years ago, Egan’s parents received some very bad news from medical professionals.
“In August of 2008, we received confirmation at the same time that both [daughters] Claire and Cecelia were diagnosed with Friedreich’s ataxia,” said Dan Egan. “It was surreal, excruciating, scary and heartbreaking. Slowly, but surely, we assembled our health team, we went to work in terms of implementing a strategy for wellness including specialist doctor monitoring, physical therapy, vitamin therapy, acupuncture and other non-invasive health solutions. Most importantly, we lived our lives and we vowed that none of the girls would be defined by this, and that our family and faith were the basis of our foundation. We bravely had to let go of the life we had planned to enjoy and be grateful for the amazing one we are living.”
“We see a specialist in Philadelphia who is researching ways to help with a cure,” Claire said. “Cecelia and I both go to PT weekly and we spend a lot of time swimming during the summer for exercise. We have a lot of similar interests and we are like any other sisters. Cecelia has watched every episode of ‘Glee’ at least seven times!”
Oldest sister, Emma, currently is a freshman at Syracuse (New York) University.
“Cecelia is very smart and sassy,” Emma said. “She’s funny and sarcastic and works hard at everything she does. She is a beautiful girl, inside and out, and I am most proud of her striving for independence. I cannot imagine the amount of courage and strength it must take for her to try and do as much as she can on her own. She makes every effort to maintain her freedom and only asks for help when she really needs it.”
“Cecelia is a confident and independent young lady who is your typical teenager,” said Colleen Gribbin, principal of St. Mary Academy- Bay View. “She works extremely hard not only in the classroom, but also in performing arts. Her strong will gets her through long days of class and rehearsals. Rarely will you ever encounter Cecelia without a smile on her face as she makes her way through the halls of St. Mary Academy-Bay View.”
“Cecelia’s honor as the recipient of the National High School Heart of the Arts Award is a true testament to the depth of spirit and courage that she brings to school with her every day,” said Sister Marybeth Beretta, RSM, president of St. Mary Academy-Bay View. “Cecelia’s award is an inspiring affirmation of how she has been a gift to our school community, and how our school community has been a gift to her.”
“I wasn’t expecting this award whatsoever,” Egan said. “I’m grateful for it.”
John Gillis is associate director of video services of the National Federation of State High School Associations, and administrator of both the National High School Heart of the Arts Award and the National High School Spirit of Sport Award programs.