Caroline, founder of Harry’s Hydrocephalus Awareness Trust (Harry’s HAT), created the charity after her son Harry was diagnosed with hydrocephalus—a condition characterized by a build-up of fluid in the brain, which affects 1 in every 770 babies and can be fatal if untreated.

“Most children and young people with hydrocephalus are kept alive by a device called a shunt,” she explains. These devices, while lifesaving, can fail. “It’s not uncommon for a child of 13 to have endured 40 brain surgeries.”

The charity addresses a lack of professional training and family support. In the past year, Harry’s HAT has supported 578 families and reached over 3,000 individuals. It offers bespoke resources, books, and programmes for siblings and families navigating the condition.

Thanks to new funding from The Wisley Foundation, the charity is expanding its support network in Surrey and Southwest London. “We want to provide segmented support—relevant to where the family is on their child’s journey,” says Caroline. “Families often feel isolated. Our goal is to empower them through connection and understanding.”