Every year, Shriners Hospitals for Children selects two National Patient Ambassadors to represent the health care system’s patients. The ambassadors spend the year telling their stories of perseverance in the face of adversity and the ways Shriners Hospitals for Children has made a dramatic, life-changing difference in their lives. The new national patient ambassadors were introduced during the premiere of their documentary called Free to be Me as part of Shriners International’s annual convention, known as Imperial Session.
Here are just a few highlights of their amazing stories:
From birth, Isabella had difficulty feeding and sleeping. Her parents, Roselyne and Tim, went from doctor to doctor seeking answers, but no one could identify a cause. As she grew, her parents became convinced that something was seriously wrong. Isabella’s speech sounded like she was whistling and she had ear and sinus infections constantly.
Searching for answers
For five years, Roselyne and Tim sought answers for their little girl, but continued to be unable to obtain even a cause or a diagnosis. Some professionals thought Isabella was cognitively impaired; others thought she was deaf. One day a family friend in the Chicago area heard about the issues Isabella was facing and suggested the family apply for treatment for Isabella at Shriners Hospitals for Children — Chicago. The family did not know at the time that their friend Dick Anderson was a member of Medinah Shriners and, at the time, Chairman of the Board of Governors of the Shriners Hospital in Chicago. Anderson was glad to be of help. He has said that helping Isabella and her family find the help they needed was life-changing, and that he wished all the Shriners understood the impact they can have on the health care system’s patients and families.
At their first appointment, an interdisciplinary team of professionals assessed Isabella and, within minutes, provided a diagnosis. Isabella had a submucous cleft palate, a form of cleft palate that is not easily identifiable, as the palate is covered by a thin membrane. “It felt like the whole world came down on us; we finally knew the diagnosis,” said Roselyne. Isabella was scheduled for surgery to repair the cleft and subsequently received speech therapy for two years.
Finding her own voice
Isabella, now 14, lives in Florida with her family. She has gone from struggling to be understood to becoming a gifted vocalist, and hopes to perform professionally one day. Isabella volunteers at a local veterinary hospital, pet sits and babysits. She enjoys painting, poetry and outdoor activities. She also actively seeks ways to give back to Shriners Hospitals for Children.
Emily’s mother, Joy, did not experience significant issues during pregnancy, but moments after Emily was born, that changed. Emily was rushed by ambulance to a hospital in a larger city only hours after birth, and spent her first two weeks in the NICU, where doctors gave her a complete assessment.
Emily was born with spina bifida, as well as severe scoliosis (missing eight ribs on her left side) a leg-length discrepancy, additional orthopaedic conditions, bladder and kidney problems and other issues. When she was 6 weeks old, Emily had surgery to close the defect over her spinal cord. The following day, a long list of serious complications began, keeping her in the hospital for 28 days. During this time, the Mellishes learned about Shriners Hospitals for Children from a close friend. “It was comforting to know that even before I needed to worry about a place to take her orthopaedically, that someone had come forward and said there was a place where Emily would be taken care of,” said Joy.
Finding the right team
Emily was first seen at Shriners Hospitals for Children — Erie when she was approximately 6 months old. There, she has undergone several surgeries. Other surgeries, including a VEPTR (vertical expandable prosthetic titanium rib) procedure, which stabilizes the spinal curve and levels growth, were done through a collaboration between Shriners Hospitals for Children and Children’s Hospital of Pittsburgh. Emily has also been seen at Shriners Hospitals for Children — Philadelphia, where external fixators were used to straighten Emily’s leg at the knee, and increase leg length.
After this, she was able to ride a bicycle for the very first time. Emily always amazes her doctors with her “no limits” attitude.
Giving back with Beads for Needs
Today, Emily is an energetic and sociable 11-year-old. She loves dancing, swimming, painting pottery and public speaking. In 2012, she started Beads for Needs, a foundation dedicated to raising funds for Shriners Hospitals for Children through bracelet and photograph print sales, and has raised more than $80,000 for Shriners Hospitals for Children – Erie. Without Shriners Hospitals for Children, Emily would not be Emily, she would be forced into a box,” said Joy. “With Shriners Hospitals there are no limits to what she can do.”