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
Friday, 18 May 2012
Public Speaking!
Harry was invited to the Early Years unit at Overthorpe J&I School today to talk to the children about being chosen to carry the Olympic torch. I was so very proud of Harry. He spoke clearly and confidentley and most importantly age appropriatley to the children who ranged from 3-5 years old.
We've offered to visit the children again with the torch for them to be able to see the real thing and not just pictures. Thank you to all the children & staff at Overthorpe who made Harry feel so welcome.
Sunday, 6 May 2012
Harry's 1st TV debut!
Please tune in to watch Harry on SKY Channel 255 - Home & Health+ on the show Mystery Diagnosis on Wednesday 9th May at 1.00am. Thank you xx
Thursday, 3 May 2012
Paediatric Leg Gaiters
Harry received his leg gaiters from Orthotics yesterday. He has to wear them for 30 minutes a day to support, strengthen and hopfully straighten his tight hamstrings. We will start with just 5 minutes a day for the first week and then gradually build up the time.
They are bigger than I imagined and it is yet another reminder that he has a Progeria. They dont bother Harry so I guess that's the most important thing.
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