At just five days old, Rosemary faced a daunting battle when she contracted bacterial meningitis. Her grandmother, Angela, recounted their harrowing experience, “She went to the pediatric ICU, where she nearly died and had to undergo a bilateral craniotomy to treat the infection that had walled itself off in her brain.”
Rosemary’s odds were grim as her tiny body struggled with multiple system failures, and she had to rely on a respirator for survival. Despite the prognosis, Rosie defied the odds. However, she emerged from her ordeal with cortical visual impairment (CVI), a brain-based visual impairment affecting her visual pathways. CVI is the leading cause of childhood blindness and low vision, as noted by the Perkins School for the Blind.
Rosie’s CVI Diagnosis and Progress
Credit for this unusually early diagnosis is due to a young occupational therapist who visited Rosemary daily in the ICU. This therapist, once mentored by a CVI expert, recognized the potential of this disability. The OT shared her mentor’s contact information so that the family could get an appointment with her. She also put a request in Rosie’s medical record for a specialist, a neuro-ophthalmologist, who she knew was well versed in CVI.
Today, at the age of four and a half, Rosie, as she is now known, has made remarkable progress. She can walk independently, leaving behind the wheeled walker she once relied on. Although previously speech-delayed, Rosie speaks in complete sentences, and her cognitive skills appear age-appropriate. Angela lovingly describes her as “the light of our life.”
Rosie’s Education and Interests
Rose was certified by her school district to attend the Maryland School for the Blind, based upon her IEP. She has now begun pre-k there. Rosie receives a range of therapies, including physical therapy, speech-language pathology, and orientation and mobility. She attends an adaptive PE program. Her parents are exploring the possibility of hippotherapy, and therapeutic horseback riding. Both of these were recommended by her neuro-development specialist.
Rosie is passionate about collecting “little things,” like miniature animals, tiny food items, and beads. She keeps these cherished treasures in a little bag or pocket and is also a devoted fan of “Curious George.”
Rosie’s Grandmother, Angela
Angela acknowledges the unique challenges faced by grandparents of children with disabilities, often referred to as a “double whammy.” She worries not only for her granddaughter but also for her daughter, Erin.
Angela takes it upon herself to educate others about CVI, a misunderstood condition. She respectfully asks people in Rosie’s life if they are familiar with CVI and encourages them to learn more about it through a provided website. Angela emphasizes the importance of understanding specific disabilities to ensure children receive the necessary treatment, as CVI is often misdiagnosed as autism.
Angela highlights the diversity of Rosie’s support team within the family, with each member handling Rosie’s needs uniquely. Erin and Angela joined a call-in support group based in New York for CVI, but Erin’s schedule made it challenging to participate in evening meetings. They found a solution where Angela represented them both and kept Erin informed.
Rosie’s Spirit
Rosie’s spirited personality brings laughter to many situations. When she gets frustrated, she often exclaims “foof,” a phrase that has now become a shared source of humor among family members, uniting them in moments of struggle.
For Rosie’s family, laughter and celebrating her accomplishments are how they navigate their challenges. Talking to the family, it is evident that they draw inspiration from every situation and remain unwaveringly positive.
Angela shares a reassuring sentiment, “I am constantly reminding myself, when I am worried or scared, that Erin and Rosie have this. In fact, she is “Rosie the Resilient.”