Held by her adoring family and with dog, Bunny, by her side, 23-year-old, Olivia Lorraine Burns went home to be with Jesus on February 9, 2019 at Christiana Care Hospital in Newark Delaware. She was the beloved daughter of Glen J. and Victoria Pasquella Burns and sister, Emily Hegman (Robert) all of Delaware.
Olivia was born at home on August 17th 1995 suddenly and into her Daddy’s hands. Just as quietly as she entered the world, she left it, into her Heavenly Father’s arms. She will easily be remembered for her tenacious spirit, sheer determination, will to overcome her obstacles, and her huge, infectious smile.
While her parents live in Delaware, the involved care that Olivia necessitated required her to reside at The Voorhees Pediatric Facility (VPF) in Voorhees, NJ. Her care-team included Dr. Caitlyn Papastamelos, Dr. Jillian Gormley, the extraordinary nursing team of NP’s, RN’s, LPN’s, CNA’s, nursing administration, respiratory therapists, and occupational and physical therapists, recreational staff, and amazing administration, as well as countless others. It was under their watchful eye that Olivia was able to live in the least restrictive environment that met HER needs but kept her medically stable. Special Care nursing facilities that meet the medically complex needs of the young adult currently do not exist in the community. A legacy for Olivia will be the right of the “Choice” of the family to pursue the best option for their adult child when this care cannot be replicated.
Twenty-three years of complex medical needs requires an army of caregivers. Olivia was cared for by the most loving and skilled physicians, nurses, and therapists, many whom have followed her for years. This included Chester County Hospital, Children’s Hospital of Philadelphia, Nemours A.I. DuPont Hospital for Children, Virtua Voorhees Hospital PICU, and The Center for Special Health Care Needs at Christiana Care under the guidance of Dr. Charmaine Wright. Bayada and Personal Healthcare Inc. provided at-home skilled care until Olivia was thirteen years old. Many of those nurses have remained friends and cheerleaders to Olivia and her family. In her final days she was lovingly cared for by the Christiana Care MICU team who so gently embraced her uniqueness and the magnitude of this loss.
Livi’s earthly home was a reflection of her colorful personality and positive outlook despite her medical complexities and obvious challenges. Surrounded by the things she adored, her rooms, home or hospital, were always illuminated with disco lights (there could never be enough), a remote control always occupied her hands, and her two TV’s had to be on. She loved to blow kisses or entertain with “dance parties” by playing her electric piano. She also adored the movie Frozen! Her dog Bunny visited her home, VPF, almost nightly dressed in costumes and could be found snuggled next to her but not before greeting the other patients and staff.
Olivia graduated from the Bancroft School in 2016 and prior to this attended the Child Career and Development Center and First Step of Chester County.
The world is a better place because of this precious young lady. Without a doubt she has influenced policies regarding individual’s rights who have mental retardation. Olivia’s legacy is not only in the strength and joy that she showed to others, but, as a child with special needs, she led with a spark to make the world of disabilities a better place, both for herself, and for other children in the same position. Her inspiration led to the creation of the modern facilities of the ARC of Chester County in West Chester, greatly expanding a community services organization, which over the years has provided education and support for children and adults with disabilities.
Additionally, Olivia raised thousands of dollars for Team CMMD and the American Cancer Society through her ‘Balls in the Bucket’ fundraisers over multiple years. In her death she was able to give the “gift of hope” through a compassionate evaluation as an organ and tissue donor by The Gift of Life Donor Program.
Olivia’s biggest legacy was her daily reminder to us that death and disability are only on this side of the cross! While she has caused many a calloused knee we recognize that this journey involves a lot of grace and that in the end, we are so thankful for the knowledge that she is in Heaven and our assurance of joining her there one day.
In addition to her parents and sister, Olivia Lorraine is survived and adored by her maternal grandmother, Mary Anne Pasquella of Coatesville, PA; paternal grandparents, Jack and Eleanor McFadden of West Chester; and numerous aunts, uncles and cousins. They have supported and walked alongside her in her inspiring journey.
Olivia is preceded in death by her grandfather,
William Edward Pasquella of Hatboro PA, formerly of Exton.
A time of Message and sharing will begin at 1:00 PM on Saturday, February 16th, at Christ Community Church, 1190 Phoenixville Pike, West Chester, PA. Family and friends may call from 11:30am to 12:45pm (*VISITATION AND SERVICE WILL BE HELD IN THE MAIN AUDITORIUM*). A light luncheon will follow service. Interment will be private.
To honor her joyful spirit and positive outlook, please feel comfortable in dressing colorfully for the viewing and service as we reflect on her beautiful life.
In lieu of flowers, memorial contributions may be made to Arc of Chester County, 900 Lawrence Dr., West Chester, PA 19380 or The Gift of Life Family House, 401 Callowhill Street, Philadelphia, PA.