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
Harry’s Story
Harry Degiorgio’s first birthday should have been a fun filled day with family, cake, balloons and presents. But instead, Harry woke up on the morning of his birthday in a hospital bed after an hour-long seizure. Worse was to come a few weeks later when little Harry had ten seizures in 72 hours. The fear... Read More
