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.

Tuesday, 19 April 2011

Brunel University & Alton Towers

We visited Brunel University for a Progeria Conference where we met & listened to Doctors, Scientists, Researchers & Professionals discuss Progeria and all the science behind it. We shared the day with the amazing Hayley Okines and her amazing family. Hayley very bravely gave a thank you speech to the entire room. Hayley has HGPS which differs from Harry's APS though they do share similarties.

Next we all travelled together for a wonderful day at Alton Towers where we filmed with Hayley for her latest documentary......watch this space!!!

It has been an amazing couple of days for both Harry & Hayley to share happy memories and have lots of precious fun together. Harry & Hayley will be friends forever xxx