Atypical Progeria Syndrome Harry's story

Hi, Im Harry Crowther, Im 24 years old and I have an extremely rare genetic disorder known as Atypical Progeria Syndrome (Non Classical Progeria) whereby I have a defect with the LAMIN A/C gene (LMNA). Though not to be confused with the classical Hutchinson Guilford Progeria Syndrome (HGPS) - both are Premature Aging Disorders. I was diagnosed in the USA aged 7 years old. Together with my Mum I keep this blog. Hope you enjoy my story.

Tuesday 6 August 2013

Progeria Reunion - Ashord, Kent 1st-6th August 2013

What another amazing few days Harry has had with his Progeria family. We have visited 'Ripley's Believe It or Not' in London, followed by a cruise down the Thames. A trip to a rare breed farm and also a BBQ and an evening of games on the lawn.

The farewell party saw a group of young boys known as Vortex Dance Crew show us their moves and musical entertainment from Miss Skoom all the way from Norway.

The children were also entertained by a variety of children's entertainers and a photo session with a magical, mythical twist. There have been ice cream vans, chocolate fountains,bouncy castles and fun swimming in the pool.

Thank you to Hayley's Mum & Dad (Kerry & Mark) for yet another wonderful reunion. Until next year xxx