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
Sunday, 13 November 2011
Reunion
From October 27th to 1st Nov our family attended the 2nd UK Progeria Reunion held in Kent.
To see Harry's face as he saw all his friends again was amazing & what was equally amazing was that Harry's dad John his big sister Emma & big brother Jack came too. Team Crowther sharing this reunion :)
We all said hello to little Lucy from Ireland & her mummy & daddy and we welcomed Dean from Birmingham & his family.
Lucy is the youngest with Progeria at just 2 years old & Dean is the oldest at 20 years old.
Dean was so inspiring as he drives a car, has tattoos & has a stunning girlfriend, Emily.
This gave everyone hope that these amazing children can lead ordinary lives. We had a great few days with visits from various animals & wizard of science & fire eaters all topped off by an amazing halloween party with a fantastic live band. Blues Brothers Little Brothers.
Thank you again to everyone who helped donate to make this reunion possible & much love as always to Hayley & gang for organising yet another wonderful reunion.
Will finish this post remembering the children who could not join us physically but were there with us spiritually & whose mums attended the reunion also xxx
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