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, 30 June 2010
Clever Chairpadbag
Just ordered Harry a chairpadbag for High school in September. Its a cool bag that holds all his books & stuff, then fastens over the back of a school chair and folds down into a back & seat cushion so that Harry will be comfortable whilst sat for his lessons. Looks brilliant. (Thanks to Harry's Aunty Julia for the link).
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.
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.
Thursday, 24 June 2010
Harry's Hot Tub
Harry's hot tub/jacuzzi is now here and Harry has been in. Its not quite warm enough yet but he couldnt wait to have a turn. The warm water & jets will help ease the discomfort of his arthritis & joint pain and its big enough for him to do his exercises that his physiotherapists do with with when he has hydrotherapy.
A big big thank you to my family & friends for their help in getting everything ready from the digging out the soil, to laying the base & doing the electrics. A huge big thank you goes to DRL Limited/Appliances on line & Jacuzzi for kindly giving the hot tub/jacuzzi to Harry as an amazing gift. We can not begin to thank you enough for your kindness.
A big big thank you to my family & friends for their help in getting everything ready from the digging out the soil, to laying the base & doing the electrics. A huge big thank you goes to DRL Limited/Appliances on line & Jacuzzi for kindly giving the hot tub/jacuzzi to Harry as an amazing gift. We can not begin to thank you enough for your kindness.
Monday, 21 June 2010
Thank you!!!!
Thank you sooooooooooooo very, very much to everyone of my family, friends & facebook friends who has helped by donating money to the UK Progeria Reunion. Harry & I are very greatful and so much looking forward to spending time with Hayley & all the other children & their families whose lives are touched by Progeria.... Thankyou, thankyou, thankyou xxxx
Saturday, 12 June 2010
Harry's Hot tub
Harry has hydrotherapy every Wed which helps promotes relaxation, relieves pain, assists movement and enables exercise. It can also help prevent his arthritis from getting worse. The hot tub will do the same so that Harry can exercise and relieve his aches and pains everyday. Harry has had the hot tub brought for him by a business so we are so very, very greatful x Have laid the patio and had the electrics done, waiting for a date for the hot tub to be installed.
Thursday, 3 June 2010
Bazilian TV
Harry has just spent 2 hours filming with 'Globo
TV Brazil' and has had the best time. Thank you so much to Marcos & Paulo for being so kind and giving Harry a wonderful experience and thank you for sharing Harry's story.
TV Brazil' and has had the best time. Thank you so much to Marcos & Paulo for being so kind and giving Harry a wonderful experience and thank you for sharing Harry's story.
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