I love this photo of Harry with all his friends, who share so much in relation to their types of Progeria. They are all friends who range from the age of 3 all the way upto 17.
Even though they speak different languages they all share amazing experiences through their love for each other and this is shown in the huge amount of hugs and cuddles they give each other.
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.
Harry
Friday, 9 August 2013
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
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
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