Harry has been prescribed daily, 75mg of Aspirin by his cardiologist as a precautionary measure which helps to reduce possible problems with his heart associated with Progeria. He has also been diagnosed with an eye condition called Blepharitis (see the link for more details) which is a condition we will manage daily from now on,ironically it usually presents in people over the age of 50! There is no cure just something else he will learn to deal with, with a smile like he does everyday!
Harry
Wednesday, 13 March 2013
Friday, 1 March 2013
5 months & counting!
Its now only 5 months until the next Progeria Reunion being held in August
Hayley Okines and her parents are working hard to raise the funds needed to host the reunion. Thank you to each and every person who has donated so far,
Harry's Dad John, his Aunty Julia & Cousin Lloyd are all in training for the Rat Rat Obstacle course, which involves grueling obstacle over a 20 mile course. Generous people have kindly been donating via the Just Giving page or by Texting DIRT55 followed by £5, £10 etc to 70070
We know of people holding all sorts of different fundraisers to help support us, from collecting money in a bottle to hosting a wonderful charity ball.
If you would like to help please feel free to email me on sharroncrowther@hotmail.com and I can email sponsor forms etc for our PROGERIA UK Charity No 1115846 which will in turn help fund the reunion for all the children in the UK & Europe to spend time together.
Loves & Thank you.
Hayley Okines and her parents are working hard to raise the funds needed to host the reunion. Thank you to each and every person who has donated so far,
Harry's Dad John, his Aunty Julia & Cousin Lloyd are all in training for the Rat Rat Obstacle course, which involves grueling obstacle over a 20 mile course. Generous people have kindly been donating via the Just Giving page or by Texting DIRT55 followed by £5, £10 etc to 70070
We know of people holding all sorts of different fundraisers to help support us, from collecting money in a bottle to hosting a wonderful charity ball.
If you would like to help please feel free to email me on sharroncrowther@hotmail.com and I can email sponsor forms etc for our PROGERIA UK Charity No 1115846 which will in turn help fund the reunion for all the children in the UK & Europe to spend time together.
Loves & Thank you.
Monday, 25 February 2013
Rare Disease Day
Harry has a rare genetic disorder. We are supporting Rare Disease Day on Feb 28th 2013
Friday, 22 February 2013
Favourite Photos
Here are just 3 of my favourite photos of Harry.
They show his smiley and cheeky character and his zest for life. Most importantly, Harry's sparkling blue eyes.
They show his smiley and cheeky character and his zest for life. Most importantly, Harry's sparkling blue eyes.
Monday, 11 February 2013
Charity Ball
Harry & I went to Hayley's Queen of Hearts Charity Ball, which raised £2,753.95 towards this years Progeria Reunion. The room looked amazing and Hayley looked like a Princess and Harry looked equally dapper! The ball was organised by Amie & Hayley's Mum Kerry. There was a magician doing table tricks, a 3 course meal, raffle & disco. Everyone who attended looked stunning in their ballgowns, suits & masks.
Sunday, 20 January 2013
Monday, 7 January 2013
Progeria Reunion Fundraiser
Please see the link to John, Julia & Lloyds JustGiving page
You can now text your donations too. Text DIRT55 £the amount you want to donate to 70070
Thank you so much xxx
Please sponsor Harry's Dad, Aunty Julia & Cousin Lloyd in completing the Worlds Largest Obstacle Course and help them raise money for this years Progeria Reunion.
You can now text your donations too. Text DIRT55 £the amount you want to donate to 70070
Thank you so much xxx
Please sponsor Harry's Dad, Aunty Julia & Cousin Lloyd in completing the Worlds Largest Obstacle Course and help them raise money for this years Progeria Reunion.
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