SBSK interview with Ivan
What does Ivan have to say about living with a rare brain formation disorder?
Over at Special Books for Special Kids, Chris Ulmer published an interview with Ivan on 7 August 2026. Ivan, who has Dnady-Walker syndrome,1 uses technology to communicate, and he has a lot of phrases and sentences (even paragraphs!) programmed into his speech device. The interview merits a watch.
Mr. Ulmer’s talk with Ivan and his mother are available on YouTube.
Readers interested in learning more about Dandy Walker syndrome might consult advocacy organizations such as the Dandy-Walker Alliance, the Brain Charity section on the syndrome, the Dandy-Walker Syndrome organization, or other sources. For those seeking academic resources, see the fascinating descriptions by Hirsch et al. (1980) and the 2025 report by Bdair et al.
Dear Readers of long standing will know that Mr. Ulmer has been publishing videos such as this one since 2015. Mr. Ulmer’s advocacy for individuals with disabilities is a project about which one can learn about (and support) at the site, SBSK as well as at other sites (e.g., “Chris Ulmer” on Wikipedia).
References
Bdair, M., Milhem, F., Sawaftah, Z., Hamshary, H., Abdul‐Hafez, H. A., Hattab, M., ... & Naseef, O. (2025). Unraveling Dandy‐Walker malformation: A comprehensive literature review and case insight. Clinical Case Reports, 13(4), e70356.
Hirsch, J. F., Pierre-Kahn, A., Renier, D., Sainte-Rose, C., & Hoppe-Hirsch, E. (1984). The Dandy-Walker malformation: A review of 40 cases. Journal of Neurosurgery, 61(3), 515-522.
Footnote
The syndrome is rare (~1 in 30,000 births) and is also known by multiple other names, including Dandy-Walker anomaly, malformation, or cyst. There are multiple features to the syndrome and variation in those features across individuals who have it. It is the result of a cyst in the lower, rear area of the head that interferes with growth of parts of the brain. According to the the resources about rare diseases from the US National Institutes of Health, Dandy-Walker syndrome is
A congenital brain malformation typically characterized by incomplete formation of the cerebellar vermis, dilation of the fourth ventricle, and enlargement of the posterior fossa. In layman’s terms, Dandy Walker malformation is a cyst in the cerebellum (typically symmetrical) that is involved with the fourth ventricle. This may interfere with the ability to drain cerebrospinal fluid from the brain, resulting in hydrocephalus. Dandy Walker cysts are formed during early embryonic development, while the brain forms. The cyst in the cerebellum typically has several blood vessels running through it connecting to the brain, thereby prohibiting surgical removal.