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.

Thursday 21 October 2010

Telling his story!!

Harry has a very busy 3 days of filming coming up, to tell the story of his Progeria.
I am so passionate to tell Harry's story and to (I know I say this so many times) raise awareness for his type of Progeria. Its been tough preparing for this, Today Ive sat and watched video footage of Harry aged 6 on holday in Florida before his diagnosis of Progeria. I can tell that Emma is Emma & that Jack is Jack but to look at Harry then and to look at him now its like a different little boy. You can clearly see looking at him now the effects his Progeria has had on his apperance and its been tough to watch. The Harry in Florida is the same cheeky, smiley, funny little boy as Harry is now, and that is a comfort.
On the plus side we have laughed and giggled at the funny things he said aged six, the words he couldnt prounouce and his crazy dance moves but the way he looked now to then is taking some getting used to. You dont see it living with it day to day and photos dont give an accurate picture but to see moving pictures and hear the way he talked and watch the way he moved is so very different to my little man Harry today...Progeria has a lot to answer for!!!!!! but it cant take Harry's spirit and zest for life away...