A young girl from Okehampton has set herself a fundraising challenge to raise money for a charity supporting research into a rare genetic condition that affects her friend’s brother, Kobe.

Seven-year-old Rae Hooper will carry out a sponsored swim next month to raise money for the Cystinosis Foundation, a charity that funds research into cystinosis, a rare genetic disease that causes amino acids to build up in the cells, forming crystals over time and damaging the body’s organs.

Rae said she decided to support the charity “to help other children and to help Kobe”. This will be her first sponsored challenge, and she hopes to raise at least £50. She will put her swimming skills to the test and complete five widths in a row – the furthest she has ever swum – at the Parklands Leisure Centre on February 1.

Kobe made news in September last year, when his uncle and a family friend climbed Mount Kilimanjaro in Africa to support the Cystinosis Foundation, ultimately raising over £30,000 for the charity. Kobe was diagnosed with the condition, which affects only around 2,000 people worldwide, in October 2024 when he was only seven months old.

Anyone wishing to donate can do so through Rae’s mum’s PayPal account at [email protected].