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, 17 February 2010
Insoles round 2!!!!
Harry has got his new insoles, they are alot softer than his others. He did get up during the night with achey legs and wanted a paracetamol so he's still breaking them in.... half an hour for the first time, an hour the next and so on...... See how he copes with them tomorrow when we go out for a walk around town in them..
Sunday, 7 February 2010
Personal Achievements
Today Harry will be attending Bradford City Football club along with some of his friends from 8th Mirfield Cubs, who are to be presented with their Chief Scout Silver Awards & Certificates. Harry has worked really hard to complete challenges to win this award,.
We have the date also for Harry to attend St George's Day Parade at Windsor Castle in April, in the presence of Her Majesty the Queen. Harry has been award the Chief Scout's Commendation from Bear Grylls for Meritorious Conduct. Harry has even recieved a letter from the Mayor of Mirfield congratulating him on this achievement.
We are so very proud of Harry, he loves Cubs & Scouts and his Akela, Chris Wilding is such a brilliant Leader and has nominated Harry for these awards. We would personally like to thank Akela & all the leaders for all their help & support with Harry during his time in Cub Scouts.
Harry takes each days as it comes and lives life to the full, he never complains even though we know he has his aches and pains in his legs & neck. They are part of Harry and he has learned to live with them and the things he can and cannot do. I see the subtle changes in his apperance daily but his positive upbeat attitude keeps us all smiling.
Enjoy these special times Harry, You deserve them...
We have the date also for Harry to attend St George's Day Parade at Windsor Castle in April, in the presence of Her Majesty the Queen. Harry has been award the Chief Scout's Commendation from Bear Grylls for Meritorious Conduct. Harry has even recieved a letter from the Mayor of Mirfield congratulating him on this achievement.
We are so very proud of Harry, he loves Cubs & Scouts and his Akela, Chris Wilding is such a brilliant Leader and has nominated Harry for these awards. We would personally like to thank Akela & all the leaders for all their help & support with Harry during his time in Cub Scouts.
Harry takes each days as it comes and lives life to the full, he never complains even though we know he has his aches and pains in his legs & neck. They are part of Harry and he has learned to live with them and the things he can and cannot do. I see the subtle changes in his apperance daily but his positive upbeat attitude keeps us all smiling.
Enjoy these special times Harry, You deserve them...
Tuesday, 2 February 2010
Happy 11th Birthday Harry
Its Harry's 11th birthday today and we've just done his cake and candles. I cant believe my little man is 11 and will be starting high school in Sept. He's too little and the blazer for his uniform will swamp him. Will have to have one specially made I think.
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