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
Sunday, 25 March 2012
Fun & Physiotherapy
Today, at last is a lovely, warm spring day and Harry's enjoyed some fun and physio in his hot tub. This is the best type of excercise for children with a Progeria as the water is warm and gentle on their joints.
Harry spends more time under the water, doing somersaults and headstands, something which is impossible for him to do out of water on dry land. I love watching him have fun in the water & for a short while I can forget that his joints are stiff and cause him to ache. He should have been a dolphin :)
Saturday, 24 March 2012
Harry's dad in training for Run!!!
Harry's dad John is training really hard so that he can set off on the challenge with Charlotte and Becky when they commence their mammoth run on Thursday 5th April. John is very much hoping to at least run with them for 10-20 miles
Over a £1000 has been raised so far for the Progeria Family Circle. Thank you to those who have so very kindly donated. If you would like to donate please follow the link www.progeriafamilycircle.co.uk to the right of this post. Thank you
Good luck John, Charlotte & Becky xxxx
Monday, 19 March 2012
Harry & The Olympic Torch
We are pleased to announce that Harry will be carrying the Olympic Torch on Monday 25th June in Wakefield. Go Harry!!!!!
Sunday, 18 March 2012
ICE - In Case of Emergency - UTAG
Harry has worn a medical alert dog tag for a few years now, which informs people of his anesthetic alert and a difficult Intubation. However Harry now wears a dog tag with a USB stick attached which has his full medical details on. Progeria is so extremely rare that not many Doctors and medical professionals will see a case in their life time. So by putting all the details about Harry's form of Progeria on his dog tag gives them a better understanding and educates them in Progeria. Hopefully Harry will never have the need to share this information on his ICE dog tag and will keep safe from harm, but as the saying goes 'Better to be safe than sorry'.
Follow Harry's story by email
You can now keep up to date with what Harry does and read the latest news here first by just adding your email address to the link on this page. This is a free subscription and we hope you enjoy keeping up with Harry and his adventures.
Thank you
Thank you
Saturday, 10 March 2012
Those pesky tight Hamstrings!
Part of Harry's Progeria leaves him with extremely tight hamstrings, and when Harry is barefoot he, continually walks on this tip toes. After a recent hydrotherapy session his physio noted that his hamstrings on his right leg are really tight which causes Harry to have continual aches and pain in his legs on top of the arthritis.
So she has suggested that he should have an appointment to have a splint fitted, which he will wear for 30 minutes a day to strengthen his hamstrings and believe me Harry really does not like to do his physiotherapy exercises for his hamstrings. So at this present time we are awaiting an appointment to see the specialist. I'll up date later.
So she has suggested that he should have an appointment to have a splint fitted, which he will wear for 30 minutes a day to strengthen his hamstrings and believe me Harry really does not like to do his physiotherapy exercises for his hamstrings. So at this present time we are awaiting an appointment to see the specialist. I'll up date later.
Wednesday, 7 March 2012
When Harry met Hayley - 10 Marathons in 10 days!!
Harry's friend Hayley has an amazing big sister, Charlotte who along with her friend Becky are running 10 marathons in 10 days to raise money for The Progeria Family Circle. The run will start from our home with Harry cheering them on and will finish 10 days later in Bexhill where Hayley will welcome home the tired but amazing Charlotte and Becky.
Go girls!!!!
I will post further details at a later date. So watch this space!
You can now view the website and make a donation at http://www.progeriafamilycircle.co.uk/ or see link attached. Thank you
Go girls!!!!
I will post further details at a later date. So watch this space!
You can now view the website and make a donation at http://www.progeriafamilycircle.co.uk/ or see link attached. Thank you
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