Hand Splint!!

Harry has now had fitted a hand splint for his left hand to keep it in a neutral position as his hands curve due to his arthritis & stiff joints. He will wear it for 1-2 hours a day after school. He will have another fitted for his right hand in the New Year. Im sad about it as its really ugly looking and its yet another reminder of his disorder. On the positive side I know it will help support Harry's hands and ease the pain & discomfort he has. Love you Harry xxx

Switch On!!!!

Very proud of my little man tonight, first he judged the elf competition with the Mayoress of Mirfield, then Harry got to ride in Santa's sleigh with the winner into Mirfield. Harry gave a great speech then switched on the Mirfield Christmas lights. As his mum I was so very proud of him. All his family & friends turned up in support of Harry to watch his big moment.
Harry got very cold, very quickly which made him feel a little ill, so thankfully his Great Grandad gave him a lift home to defrost!!!
Well done Harry you did so well & we are all very proud of you as I know Sir Patrick Stewart will be for turning on the Christmas lights on his behalf.

Heart!!!

Harry had a heart scan today & the cardiologist said all looks well but due to his shortness of breath & heart palpatations after excercise & when in bed just as he falls asleep she has referred Harry for a 24 hour heart monitor to be worn & Treadmill heart test too. Taking Harry to have a fasting blood test on Friday to check his blood lipids also.

Harry started back at hydrotherapy today & really enjoyed it, he loves being in the warm water so much and can move freely without discomfort.

Hospital appointments/visits

Harry's DEXA scan results came back as normal which Im so happy about, its shows that Harry's bone density is ok at this time. He has a Trans Echo Cardiogram coming up along with an appointment for a hand splint to help ease the pain in his wrists and keep them supported in the correct position.

Also Harry has to have ...further x-rays taken of his bones and also a Fasting blood test to look at his blood lipids,. Will make an appointment to arrange for a prescription of Emla cream to numb Harry's skin before the blood text otherwise he will not give his consent for a blood test as his skin is so sensitive that injections are really painful for him.

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.

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...

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.