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, 29 June 2010

Transition to High School

Harry & I had a transition meeting with his High School SENCO, Medical Officer along with the specialist school nurse & head of Inclusion from his Junior school.

Im confident that they will support Harry's transition into Castle Hall.

Firstly he will be permitted to leave classes 5 minutes early to avoid the mad rush between classes. Harry will also be given a locker in a quiet area, again to avoid being crushed by his fellow students.

Harry unfortunatley due to his slight frame and also due to bruising and his arthritis can not take part in any contact sports ie football or rugby, however he will be able to be a linesman for the game and collect the ball etc so he feels part of the team and not left out.

Harry also has the option to arrive & leave school via the reception area, again to avoid the mad crush of 100's of students trying to leave school.

Harry has an induction day on 5th July at his new school. He's very excited about it.