Ashley was born in 1992. She was tiny and had some difficulties feeding, but otherwise seemed fine. At a couple months of age she developed pneumonia and was admitted to the hospital. Because she was so tiny, everyone thought she was a preemie. When the doctors learned that she was a full term infant, they decided to investigate further and tests revealed that Ashley had a severe chromosome disorder with a very poor prognosis. Cindy and John, Ashley’s parents, were told that most children with her disorder died very young. Some of Ashley’s symptoms have included scoliosis, seizures, developmental delay, kidney stones, and repeated respiratory infections.
Happily Ashley did well for many years. She grew and went to school and made many friends. She loved attending her older brother’s basketball games in her cheerleading outfit. Despite her illness she lives a very happy life. She loves her cell phone, the zoo, the mall, and all kinds of people. Her mom states Ashley “doesn’t know a stranger!” She has even made friends in the drive through at Wendy’s and she is a diehard Buckeye fan!
About two years ago after several long hospitalizations for respiratory infections, Ashley’s pulmonologist suggested palliative care to help manage Ashley’s symptoms. Cindy and John have been thrilled with the improvement in Ashley’s quality of life. Since being admitted to palliative care, Ashley has only been admitted to the hospital once and that was only for a few days. Cindy credits this to the medical monitoring that Ashley receives from the team. Cindy also says that the support has been incredible. “The doctors, nurses, social worker, and chaplain really understand what it is like to parent a child with special needs and they are always available to talk or to visit. We can call with any problem or concern and we know we can count on them to be there for us if something bad happens to Ashley.” Recently when Ashley began to lose her happy attitude, the team diagnosed her with a probable pain syndrome and are working to manage her pain and restore her joyfulness.
Ashley is now 21 years old and continues to be the delight of her family. Cindy credits Ashley with teaching her family and friends so much about what is really important in life: family, friends, love and acceptance.