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Washington Evening Journal
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Washington, IA 52353
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Health center hosts banners detailing families with special needs, disabilities
The Jefferson County Health Center recently hosted a series of banners from the University of Iowa Hospitals and Clinics' Iowa Family Story Project. Each banner contains photos and information, showing the daily joys and struggles of caring for children, youth, and young adults with special health care needs or disabilities. Photographer Thomas Langdon shadowed eight of these Iowa families.
The banners were scheduled to be in the JCHC lobby from April 3-May 2.
One in five of Iowa's children and youth has a special health care need - a chronic physical, developmental, behavioral, or emotional condition that requires more than routine health care.
The banner series reflects Iowa's diversity and include those living on rural farms, in small towns, and in bustling cities. The children, youth, and young adults range in age from one year to 28 years and have a wide range of diagnoses, including autism, cerebral palsy, down syndrome, and genetic conditions.
Although the families are different in many ways, they share a set of common experiences. They must navigate a complex and fragmented system of care, endless piles of paperwork, financial stress, and sometimes long drives for appointments that are booked months in advance. But they also share a deep, unconditional love for each other and feelings of joy and accomplishment when overcoming obstacles.
The banner seen here profiles 2-year-old Grayson and his parents Dion and Kristin. In January 2018, Grayson was diagnosed with Late Infantile Metachromatic Leukodystrophy, a disorder that affects both the brain and the nervous system. The family traveled to Pittsburgh to talk with specialists about managing his symptoms, and since Grayson's symptoms were still mild enough they offered an experimental treatment involving a bone marrow transplant. Their doctor explained that even with the treatment, Grayson's overall prognosis would not change. The transplant would slow the progression of the brain. Nothing would stop the progression of the peripheral nerves. Grayson's best time is right now. He is receiving a number of services and supports including physical therapy and palliative care and is working with a developmental teacher and physical therapist through Early ACCESS.
