Tuesday, 26 October 2010

Sir Patrick Stewart

Harry recieved a very exciting phone call today all the way from New York from non other than Sir Patrick Stewart, he asked if Harry would please turn on the Christmas lights this year in our town of Mirfield as Sir Patrick Stewart is unable to attend and would like Harry to represent him by turning on the lights on his behalf......Wow

Sir Patrick Stewart is also very much looking forward to meeting Harry personally in the Spring time and that he thought Harry was an inspiration.

How so exciting for Harry and what a lovely surprise to recieve such an amazing phone call.

Thursday, 21 October 2010

Telling his story!!

Harry has a very busy 3 days of filming coming up, to tell the story of his Progeria.
I am so passionate to tell Harry's story and to (I know I say this so many times) raise awareness for his type of Progeria. Its been tough preparing for this, Today Ive sat and watched video footage of Harry aged 6 on holday in Florida before his diagnosis of Progeria. I can tell that Emma is Emma & that Jack is Jack but to look at Harry then and to look at him now its like a different little boy. You can clearly see looking at him now the effects his Progeria has had on his apperance and its been tough to watch. The Harry in Florida is the same cheeky, smiley, funny little boy as Harry is now, and that is a comfort.
On the plus side we have laughed and giggled at the funny things he said aged six, the words he couldnt prounouce and his crazy dance moves but the way he looked now to then is taking some getting used to. You dont see it living with it day to day and photos dont give an accurate picture but to see moving pictures and hear the way he talked and watch the way he moved is so very different to my little man Harry today...Progeria has a lot to answer for!!!!!! but it cant take Harry's spirit and zest for life away...

Sunday, 17 October 2010

Special Needs!!

Harry has been put on the Special Needs register at high school, I guess that's just another reminder that he's different from his peers and requires some some support in certain things....Castle Hall have been so fantastic with him, working along side his Occupational Therapist & Physiotherapist. Harry's needs are paramount & by working together Harry's needs are being met.

Friday, 8 October 2010

Dexa Scan

Harry had a DEXA Bone density scan on the 7/10/10 at the Leeds General Infirmary. This is to look at Harry's bones and measure the density of them. He recieved a copy of the scan for him to keep and I look at his little tiny, pale coloured bones and wondered how much has changed since his last scan in Dallas, Texas when he was 7.

It will be a few weeks before we gets the results after the consultant has looked at them. Keeping my fingers crossed that the osteoloysis and bone degeneration has not worsened.

Harry OT update

Harry's visit with the Occupational Therapist went well, she's been into school too, to check heights of tables etc for Harry.

Harry will benefit from leg supports on the chairs he uses in classes, these are fitted to the legs of the chair for Harry to rest his feet on to keep his feet flat,
I believe there are 4 other students in the school that also require them,
also a foam support for his back to keep him in the correct posture when working. The OT also talked about Harry having hand splints which would be used at home. Due to Harry's Progeria & the arthritis and limited movement in his hands wrists, Harry's hands are almost continually curved he never straightens them to the correct position so the hand splints will help with this.

He is continuing to enjoy High School & has had no problems with teasing, infact his fellow students have taken hin under their wing and for that I am extremeley greatful.