CP Stories: Josephine and Her Family Hit the Ground Running. They Haven’t Stopped Since.
Eventually, Josephine would be released from the neonatal intensive care unit and sent home with her parents, Nina and Zach. But for the first seven weeks of her life, she fought to survive. Born postmature at 42 weeks, she experienced oxygen loss, resulting in Hypoxic Ischemic Encephalopathy (HIE), which commonly leads to cerebral palsy (CP). “Thinking back, sometimes I’m not sure how we survived the nonstop fussing, sleepless nights, and fear,” said Nina, Josephine’s mom.
From the moment Josephine got home, Nina and Zach hit the ground running. “We dove in hard and fast,” said Nina. They were fortunate to receive a formal diagnosis at eight months, which is relatively early for CP. The benefits of an early diagnosis are myriad, but it was most helpful in that it allowed Josephine to start an intensive therapy program and gain access to early intervention services. The doctors treating Josephine at the time did not mince words—the injury was likely permanent—but they did stress that intensive physical therapy could mitigate and even improve CP-related symptoms. Nina remembers one physical therapist, Gail Fennimore, as particularly helpful and encouraging: “Gail helped us learn about neuroplasticity and the ability to reestablish or improve movement patterns and muscle tone,” Nina explained. Now ten years old, Josephine’s therapy journey has been incredibly effective in improving both her day-to-day life and her future prospects.

Camping and hiking are a big part of the Miller family life and Josephine is active participant.
And so Nina’s initial connection to the CP Research Network was a natural one, based on a desire to make sense of new information, share it, and forge bonds with the larger CP community. For Nina, this initial connection would spark a series of more formal relationships with CP organizations. She would go on to work at the Cerebral Palsy Alliance Research Foundation (CPARF) for two years, supporting their medical research grant writing program, partnership development, and helping organize the annual STEPtember fundraising event. “My two years at CPARF were some of the most inspiring and exciting of my life,” Nina said. These two years ended on a beautifully appropriate note: right around the time that Nina’s time with CPARF was coming to a natural close, Josephine had the opportunity to speak at an international summit of CP researchers interested in accelerating innovation for mobility- and speech-based adaptive technologies. At just five years old, Josephine spoke (using her eye gaze communication device) in front of a crowd of more than eighty scientists and engineers about her experience in kindergarten, and how frustratingly slow her current communication technology was. The conference—of which Josephine was, to be sure, a major part—would accelerate the development of a brain-computer interface for real-time speech.

Josephine, in her wheelchair, out shopping with her parents.
There are, of course, highs and lows, but Josephine and her family are constantly looking forward. Nina has kept in touch with CP Research Network since she first met Michele Shusterman, and has remained involved by taking on small content development projects for the organization. She recently started a demanding position at Microsoft but hopes to commit a few hours a week to CP Research Network by the end of 2022.

Summer and fall mean camping and other activities for Josephine and her family.