Physiotherapy

Harry has seen a new physiotherapist today and he's still very stiff in some of his joints, especially his legs and the right side of his body is weaker. He's been given some strengthening exercises to do and is booked in again for some more hydrotherapy. Need to invest in a gym ball so Harry can learn to balance on it, therefore strengthening his core muscles and making his right side stronger. Harry is also having another hand splint made for his left hand and he will wear his splints for 1 to 2 hours per day to support the position of his hands.

UK PROGERIA REUNION 2011

We are currently helping our great friends the Okines family, fundraise for the UK Progeria Reunion 2011 to take place in October in Kent. We are busy organising sponsored toddles, raffles, leg waxes and auctions here in Mirfield, West Yorkshire. We are looking for generous people and companies to kindly donate gifts, prize and vouchers to support the fund raising efforts. If you can help please contact me via this blog or on my work telephone number, Wellhouse Pre-School 01924 493216
Thank you so very much in advance
Sharron, John, Emma, Jack & Harry xx

Harry and the Olympic Torch

A very warm thank you to Cllr Martyn Bolt who has put forward a suggestion that Harry be nominated to be 1 of the 8,000.00 torch bearers to carry the Olympic torch next year in time fot the start of the 2012 Olympic Games. This would be an absolute honour for Harry and us if if was succesful in his nomination. Thank you to the Mirfield Reporter for the lovely story they have printed and lets hope all of Mirfield get behind their Ambassador, Harry and nominate him to carry the Olympic flame.

Brunel University & Alton Towers

We visited Brunel University for a Progeria Conference where we met & listened to Doctors, Scientists, Researchers & Professionals discuss Progeria and all the science behind it. We shared the day with the amazing Hayley Okines and her amazing family. Hayley very bravely gave a thank you speech to the entire room. Hayley has HGPS which differs from Harry's APS though they do share similarties.

Next we all travelled together for a wonderful day at Alton Towers where we filmed with Hayley for her latest documentary......watch this space!!!

It has been an amazing couple of days for both Harry & Hayley to share happy memories and have lots of precious fun together. Harry & Hayley will be friends forever xxx

Mystery Diagnosis

We have now recieved the dvd of Harry's story to be shown on Discovery Health. The show is called Mystery Diagnosis.

We have watched it and are so pleased with the show. Thank you to everyone involved at One True Enterainment and the Oprah Winfrey Network for allowing us to tell Harry's story of his diagnosis of Atypical Progeria Syndrome

We will add the dvd to my blog page soon

12!

Happy 12th Birthday to my little man xx

2011

Its been a while since I last posted, so here's an update. Harry's had 24 hour tapes fitted to his chest to monitor his heart. He also has an ECG Treadmill coming up again to monitor his heart. Will pos results once known.

X Ray results came back as expected showing the de generation of his bones in his hands, feet and collar bones. His x-ray of his jaw showed that the findings were classical of a child with 'PROGERIA'. Small, over crowded etc.

Hoping to hear some news from DR Wilson at Great Ormond Street Hospital to see if Harry will be eligible for the trials in Marseille. I really hope so. Children with Classical Progeria are seeing great results and I wish this for Harry also.

Harry is continuing with his hydrotherapy (when the pool's not shut that is) Also awaitng an appointment for his right hand splint. He doesnt like wearing his left hand splint as it gets itchy and makes his hand sweaty but Harry knows its there to support his hand.

Happy New Year and thank you for continuing to support Harry