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
Wednesday, 5 September 2018
Happy 1st Birthday Isla and other news...
Harry's niece Isla is turning the BIG ONE today. Isla is Harry's only niece (so far!) and they adore each other.
Harry is very much looking forward to travelling to Portugal in October to attend this years Progeria reunion, hosted by Claudia (pictured with Harry below) and her family. This wiil be an action packed few days filled with lots of exciting trips, love and laughter. Watch this space for updates.
Sadly for our Progeria Family Circle, at the start on 2018 we said goodbye to Lucy from Ireland, who fell asleep on January 1st. Lucy was just eight years old. In the photo below is Harry with Lucy and also Hayley who gained her Angel Wings on the 2nd April 2015. We all miss them so much.
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