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
Thursday, 2 October 2014
"It's not goodbye, it's see you again soon"
Harry giving Claudia a kiss and a cuddle the night before she flew home to Portugal.
These cuddles and kisses are so important to the children. It's not goodbye it's see you again soon...
Wednesday, 1 October 2014
International Progeria Reunion - Istanbul, Turkey September 2014
Harry has been lucky enough to attend another reunion this year as guests of Gamze and the President of Turkey.
I was unable to travel with Harry due to commitments in University, so on Sunday 21st September Harry travelled to Turkey with his Grandad. However on the evening of Wednesday 24th I surprised them both by arriving and spending the rest of the week with them.
We had a great time and thank you to all involved.
I was unable to travel with Harry due to commitments in University, so on Sunday 21st September Harry travelled to Turkey with his Grandad. However on the evening of Wednesday 24th I surprised them both by arriving and spending the rest of the week with them.
We had a great time and thank you to all involved.
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