Harper is a nine year old with complex medical history including 28 week prematurity twin gestation, bilateral grade 4 IVH, spastic quadriplegic cerebral palsy, intermittent dystonia in upper extremity, recurrent infectious intracranial ventriculitis with abscesses, central diabetes insipidus, central precocious puberty, central adrenal insufficiency, refractory epilepsy, dysautonomia, gastronomy dependence, chronic lung disease on nocturnal BiPAP, cortical visual impairment with optic atrophy, and intellectual disability.
Having a child with severe disabilities requires a medical vocabulary and understanding that no parent imagines learning.
Harper is a joyful and spunky nine-year old with an infectious smile and the sweetest voice you’ve ever heard. She has a remarkable ability to connect with people and leaves a lasting impression on everyone she meets. Harper also has cerebral palsy and uses a wheelchair. She and her twin sister, Laiken, were born 12 weeks premature and both were diagnosed soon after birth with a brain bleed. Following surgery to resolve their hydrocephalus, the girls spent nearly two months in the NICU at Children’s Mercy Hospital feeding and growing until they were finally able to come home.
“We thought our time in the NICU would be the end of our medical journey, but it was really just the beginning. Harper’s first year of life was a whirlwind of nine neurosurgeries, two brain infections, and lengthy hospitalizations. As a result, Harper’s brain had suffered severe damage; developmentally, she functions at a 6-9 month level and is considered “total care,” meaning that she cannot sit unassisted, is non-mobile and cannot assist with transfers, communicates non-verbally, and has little to no functional vision. Despite these devastating realities, Harper’s resilient spirit remains unscathed. Harper has a remarkable ability to find pure joy even on the hardest of days; something as simple as a sneeze can elicit a contagious giggle from her.
Harper’s cerebral palsy is accompanied by a host of other medical conditions, which includes diabetes insipidus, adrenal insufficiency, epilepsy, dysautonomia, dystonia, and chronic lung disease. Harper’s life has been a revolving door of inpatient hospitalizations and she has endured 14 separate surgeries to date. Most of her days are spent being transported to and from Maple Valley State School, therapy, and appointments with the nearly ten specialists who manage her complex medical needs. Traveling with Harper has always been an endeavor, but as she approaches 70 pounds, I feel the literal and figurative weight of being solely responsible for transporting her because I am a single mother. Despite a wonderful support system, I am the only one physically able to transfer Harper as well as break down and load her 65-pound wheelchair into the trunk of a vehicle. Not only is the process inconvenient and time consuming, but due to her partial bilateral hip dislocation and low bone density, it is increasingly unsafe for Harper. It was always understood that eventually we would need a wheelchair accessible van for Harper, but it became apparent that it was time for a new vehicle this when we went on our first family vacation to visit family in Pennsylvania. I knew that a plane ride with a child who requires an inordinate amount of equipment and supplies would be an endeavor and I expected that finding a rental vehicle and appropriate lodging would take some effort. But I never anticipated that our biggest hurdle would be simply getting to the airport. My small SUV wasn’t large enough to transport our family and our luggage with Harper’s wheelchair taking up all the trunk space. After many phone calls, we were able to secure a ride to and from the airport with a family who had an accessible van. But the true “A-HA” moment came when we arrived in Philadelphia and located our rental vehicle; a wheelchair accessible van for us to use for four whole days.
Normally, taking Harper to the zoo, a restaurant, or even on a simple trip to the grocery store takes an incredible amount of effort and planning. But we were able to do all those things while we were on vacation with ease and efficiency because we had a vehicle that truly accommodated our family. The experience made it obvious how much transportation barriers affect Harper’s quality of life. Harper is so much more than her disabilities and I want to give her opportunities to experience the world around her in fun and exciting ways; not just leaving the house for grueling therapies or to sit in a doctor’s office. I am already looking forward to all the places our family will be able to go in our new van, including the park, swimming, community events, family functions, and of course, another vacation.”
Lack of transportation is a serious problem for many Variety KC families. Just getting to doctor appointments and therapy can be impossible. Help us make the impossible – possible. If you are able to help, please consider donating to varietykc.org/donate.
