This week we speak to Jess Muxlow, 25, who lives in the West Midlands with her partner, Lee, 28, and their two-year-old daughter, Freya. Jess was diagnosed with a mass in her brain when she was 18.

The study focuses on Chiari malformation type I (CM-I), where the lower part of the brain extends too far into the spinal cord – typically linked to having a smaller-than-normal occipital bone at the ...