University of Iowa Hospitals and Clinics

The Schminke Family

Young boy with puppy
"Grayson is happiest when he is at home, with familiar surroundings, and with his puppy Milo."

Grayson is two years old and lives with 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.

Father holding son wearing cowboy hatMother and son touching nosesToddler with walker