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, 30 December 2011
2011
Harry has had yet another busy year, aside his different hospital appointments, he's also got up to some adventures. He spent a long weekend with Hayley in Bexhill on Sea which included Zumba, a psychic event and a parachute jump.. (Harry didnt jump, we just watched!!)
Hayley visited us here in Yorkshire, which was fun on the Canal boat, which was seen on Hayley's documentary on Channel 5's Extraodinary People.
Harry has raised money for both the Progeria Reunion and for Great Ormond Street Hospital of which he is a patient.
Harry & Hayley also travelled to Russia, what an adventure that was!! but a worthwhile visit all the same.
October was the Progeria Reunion and Harry met up with all his friends, including Christian, who sadly passed away from Progeria in December. Harry was so upset as this was his first experience in losing one of his friends who are so very special to him.
Harry helped turn on the Christmas lights in Huddersfield which was a great evening.
The big announcement of the year was that Harry will be representing Yorkshire by carrying the London 2012 Olympic flame on the 25th June 2012.......Watch this space..
Harry's next big milestone will be turning 13 in February 2012. I cant believe my little man will finally be a teenager...Wow
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