Two-year-old Daisy Parker, from Seaton, Workington is the seventh person in the UK to be diagnosed with Shashi-Pena syndrome, an extremely rare neurodevelopmental disorder caused by mutations in the ASXL2 gene, which is thought to only affect around 55-60 people worldwide. The syndrome affects development in the body, with Daisy being unable to talk and walk, despite turning three in April of this year. (Image: Supplied)Speaking about what it's been like for the family since Daisy's diagnosis, Danielle said: "It's a bit of a weird one because we have got an answer now, but also we haven't. "We know she has got Shashi-Pena syndrome but we don't know what that means. Since her diagnosis, Daisy's family have started fundraising under the name 'Daisy’s Diamonds', walking 2 million steps in the month of August 2025, raising $2,749 for the ARRE Foundation.

Source: The Times January 22, 2026 11:16 UTC