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.

Monday, 20 September 2010

Ambassador for Mirfield

I am very proud to announce that Harry has been chosen and sharing the accolade with
Sir Patrick Stewart to be an Ambassador of Mirfield & will be
presented with his award on Sunday 26th September at a Civic Ceremony.

Friday, 17 September 2010

Medical Appointments

Harry has an apointment with an Occupational Therapist on Monday 20/09/10
to look at the limited movement he has in his hands, fingers & wrists.
This is his latest referaal to another specialist.

We are also awaiting an appointment to come through for a DEXA scan which measures bones density. Harry last had one of these ...in Dallas when he was diagnosed aged 7

Thursday, 2 September 2010

Milestone

Well, Harry started at Castle Hall School today in Year 7. I was nervous, he was nervous but in the end we'd nothing to be nervous about. Harry LOVED it!!!!
Channel 5 news (Five News) came and filmed him this morning as he got ready for his very important milestone of starting High School.

He put on his tie, packed his bag & did a piece to camera. The only downside is that Harry was without a school blazer as the small one we had ordered had not yet arrived. I hope it comes soon as I dont want Harry to feel different from his peers and give his peers more reason to stare.

All the special measures have been put in place & Harry is happy.

His favourite lesson today was German & he enjoyed his lunch of Sweet & Sour chicken with fried rice.

Here's hoping he has a good term & soon makes lots of friends.

Love you little man xx