From the moment of her birth, Harper has been nothing short of extraordinary. With a diagnosis that includes unilateral coronal craniosynostosis, third cranial nerve palsy, and tracheomalacia, Harper's life has been a series of challenges met with a radiant spirit.
Harper's journey began with subtle signs that something was amiss. Her mother noticed Harper's slightly asymmetrical face and one eye that wouldn't open, endearingly dubbed as "resting baby face." Despite initial reassurances from doctors, persistent parental intuition led to further examinations. At just ten days old, a scope confirmed tracheomalacia and later, the discovery of craniosynostosis marked the beginning of an unexpected path. Craniosynostosis is a condition where the bones in a baby's skull fuse prematurely, hindering normal brain growth and altering head shape due to restricted skull expansion.
Harper underwent crucial cranial reconstructive surgery, a procedure daunting for any seasoned adult, let alone a baby. The pre-op moments were heart-wrenching, with the inevitable separation from her parents as she was taken into surgery. Yet, Harper's resilience shone through. She emerged from each procedure with a smile, ready to embrace her family and life’s joys despite the recovery ahead.
Each day brings its own set of challenges for Harper, from managing her acid reflux with daily medication to the limitations imposed by her condition. Yet, these hurdles have only highlighted her exceptional ability to surpass expectations. She shocked doctors when she began walking when she was just 10 months old! Harper delights in her milestones, embracing each new achievement with a tenacity that inspires everyone around her.
As we know, when a child faces medical challenges, the entire family is on the journey. Her older sister, also a TinySuperhero in her own right, navigates her role with a mix of empathy and the real challenges that come with being a Sidekick Sibling. Their parents strive to balance the needs of both children, fostering a loving environment where both sisters can thrive despite the medical complexities. Harper and her sister have a deep bond, even doing their TinySuperheroes Missions together!
Despite the medical appointments and the looming MRI to assess her nerve palsy, Harper’s days are filled with laughter and dance. Her ability to speak eloquently at such a young age and her ever-present smile are sources of immense pride and joy for her family. Harper's cheerful demeanor and charm transform every room she enters!
The road ahead for Harper includes ongoing doctor visits and careful monitoring, but her family takes each day as it comes, focusing on the victories and their love for one another. Harper, with her infectious enthusiasm and unwavering courage, continues to bring joy, hope and a smile that lights up even the darkest moments! She just celebrated her first birthday, and we cannot wait to watch her continue to soar!