My son's ultra-rare diagnosis took eight years
Summary
Stephanie’s son Ben was born with serious health problems but took eight years to get a diagnosis of You-Hoover-Fong syndrome, a very rare genetic disorder. After the diagnosis, Stephanie left her job to care for Ben full time and created Blue Badgers, an app to help disabled people and their carers find discounts and information about accessible places.Key Facts
- Ben was born weighing only 3 pounds and had trouble feeding and developing normally.
- He had surgery at six months old to remove cataracts.
- Doctors took eight years to diagnose him with You-Hoover-Fong syndrome, a rare genetic disorder affecting about 40 people worldwide.
- Stephanie balanced working as a lawyer while caring for Ben before becoming a full-time carer.
- Stephanie founded Blue Badgers, a platform and app providing discounts and accessibility info for disabled people and unpaid carers.
- The app includes an interactive map where users can share details about accessible venues.
- Stephanie created Blue Badgers after struggling to find disabled and carer tickets at a local attraction.
- The goal is to support carers and disabled people by making information about accessible places easy to find.
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