Our Story
In 2009, at 28 years old Dave, my rugby playing, police officer husband started walking like he was drunk. On a holiday to Spain with friends, he suddenly lost the ability to wear flip flops, they would fly off his feet – it was the running joke of the holiday. Fast forward a few months... Read More
Christopher’s Story
Jean Hubberstey’s youngest son Christopher, lives with the rare genetic condition Bardet-Biedl syndrome (BBS). It’s an inherited genetic condition which causes vision loss, obesity, kidney abnormalities, mobility issues and learning difficulties. Jean and her husband David were no strangers to coping with such a devasting diagnosis. They unknowingly carry a gene alteration on chromosome 16,... Read More
Archie’s Story
Paige Newell-White knows all too well the emotional and physical stress of caring for a child with a rare genetic condition. Her son Archie, three, is a fun-loving, Hot Wheels collecting, smiley little boy who loves nothing more than splashing in a swimming pool. But at the age of 17 months he was diagnosed with... Read More
