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.

Monday 25 February 2013

Rare Disease Day

Harry has a rare genetic disorder. We are supporting Rare Disease Day on Feb 28th 2013

Friday 22 February 2013

Favourite Photos

Here are just 3 of my favourite photos of Harry.
They show his smiley and cheeky character and his zest for life. Most importantly, Harry's sparkling blue eyes.

Monday 11 February 2013

Charity Ball

Harry & I went to Hayley's Queen of Hearts Charity Ball, which raised £2,753.95 towards this years Progeria Reunion. The room looked amazing and Hayley looked like a Princess and Harry looked equally dapper! The ball was organised by Amie & Hayley's Mum Kerry. There was a magician doing table tricks, a 3 course meal, raffle & disco. Everyone who attended looked stunning in their ballgowns, suits & masks.