Harper has been on life support – twice – had 4 open heart surgeries, 5 eye surgeries, countless therapy sessions and even more needle pokes, but not once has she let anything get the best of her. She’s overcome every obstacle in her own time.
March 21 is World Down Syndrome Day, a day to bring awareness of not only the syndrome itself, but the amazing people like Harper who live with it. Here, Harper rocks her 3/21 gear. This date was chosen to represent the triplication (trisomy) of the 21st chromosome which causes Down syndrome.
At birth, Harper’s parents were surprised to learn she had Down syndrome, but it was her heart defect, atrioventricular canal defect, that caused them worry. The hole in her heart caused her difficulty with feeding and lung congestion, but the cardiologist wanted to wait until she was older and stronger to repair the defect.
Sweet baby Harper came into the world and was instantly showered with love as her family prepared for tackling her heart issues.
Harper’s mom also noticed a milky-white hue to her newborn’s eyes. The day after she was born, the vision center confirmed Harper had cataracts that were so big she could only see light. Dr. Hanna removed the cataracts and placed her with contact lenses to help Harper’s brain learn to see things correctly.
At only 2 months old, Harper was facing congestive heart failure and ended up in the Pediatric Intensive Care Unit (PICU).
At 2 months old, Harper’s parents came to the ER after Harper wasn’t eating and her breathing sounded off. Upon taking her vitals, it was clear Harper was going into congestive heart failure. She was rushed to the PICU where she was intubated, put on life support and would remain hospitalized for nearly 60 days.
Harper, tiny but mighty, faced many procedures before her first birthday, but you would never know it. The spunky attitude she is known for shined from the start.
At 3 months old, Harper needed her first open heart surgery. Afterward, she still had extreme pulmonary hypertension so she went home hooked to an oxygen machine to help her lungs function. She was also struggling to eat so was later fitted with a feeding tube to ensure fluids didn’t get in her lungs.
Harper stops to say “cheese” with Sophia the First.
Once home, Harper and family met with the Down Syndrome Clinic to learn how to support her development with physical, occupational and speech therapy, social work and other specialties.
Harper is full of life. Her doctors find her joy infectious, it is hard not to smile with her.
Over the next year, Harper had more surgeries on her eyes and heart, visits to the PICU and removal of her tonsils and adenoids to help with sleep.
The Cunningham family and those around them support Harper through her procedures, appointments, and therapy. Harper’s mother, Tonya, said, “They say it takes a village to raise a child and thankfully our village of doctors, nurses, therapists, family and friends were awesome…and they still are.”
To assist with Harper’s around-the-clock care, home care nurses became an extension of the family. In the midst of Harper’s extraordinary medical journey, her dad, a sergeant in the National Guard, was deployed to Kuwait.
Harper’s health journey does not stand in the way of having fun and doing what she loves, like dance class.
“We knew there was a chance he’d have to go, but we also thought her big surgeries were behind her,” said Tonya, Harper’s mom. “So much happened that spring and summer with Harper’s health…They say it takes a village to raise a child and thankfully our village of doctors, nurses, therapists, family and friends were awesome…and they still are.”
Harper Cunningham, warrior princess.
Today, Harper continues with speech therapy and checks in with cardiology and Dr. Hertle to monitor her conditions. Harper is happy, social and loves school, ballet and riding horses.
