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
Wednesday, 6 January 2010
Snow Day!!!!
Harry & I have a day off today as both our schools are shut due to the snow..... Harry is just having a warm bath and then we will get the sledge out and go and have some fun in the snow. Harry wont manage too long as he gets very cold, very quickly due to having no body fat and also having Raynauds syndrome which effects his feet, hands and tip of his nose making them turn white and burn when they get cold. So plenty of socks, warm hat & gloves and we will have some fun sledging.
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Have fun in th snow Harry..and get Mum to make you a large Hot Chocolate on your return...lotsa Love Grandma Ann xxxx
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