Russell’s son lost his sight over a matter of weeks at the age of 24 due to LHON, a rare hereditary condition.
Bhavna’s world changed forever when her seven-year-old son, Ethan, was diagnosed with Stargardt’s: an inherited, condition that slowly leads to sight loss.
Wendy’s son was born with Norrie disease, a rare genetic condition that causes blindness, hearing loss and developmental delays.
As a carer of a son diagnosed with ring 20 syndrome, Allison Watson increasingly felt the need for a patient group that would provide support and advice to help families and patients cope with the condition.
Amanda’s two children, Samuel and Heather, were born with eosinophilic gastrointestinal disease (EGID) which makes eating incredibly painful.