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

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.