A weekend of Fun

Harry & I flew to Gatwick on Friday 29th July & met with our dear friend Angela, who lost her beautiful daughter Claire to Progeria. We then hopped on a train to Bexhill on Sea where we were met by Hayley, Kerry & Mark. We then went for a beautiful lunch and a play on the beach. Friday evening Harry & I attended a Zumba Festival with Hayley, Mark & Charlotte to raise money for the UK Progeria Reunion. Harry certainley enjoyed the dancing.

Saturday 30th July. Harry & Hayley had some photos taken by the media with a view to running a story on their friendship. We watched the Bexhill carnival and Mark took Harry & Hayley to a fun fair, where more phots were taken. We shopped a bit and chilled a bit then in the evening we attended a Clairvoyant evening with Hayley, Kerry, Janie & Angela, again to raise money for the reunion.

Up at 6.15 am Sunday 31st July a sunny morning to head to the aerodrome where some very brave but equally crazy people did a skydive all to raise money for the reunion.

Monday 1st August we had a day of rest and relaxation, and Harry & Hayley playing in the Wii together, then to the train station to say goodbye. Flew from Gatwick to Manchester. What a lovely weekend Harry & I shared with very special people.

Scout Camp

Harry has been on Scout camp since Friday evening & Ive just received a post on my FB which I thought Id share, which sums up the fun Harry must be having.

"Well.. Harry slept under the stars in a Bivvy, which they made themselves out of trees, sticks and leaves, enjoyed a full cooked breakfast made by themselves, enjoyed loads of wide games, chopped wood the keep the fire burning, went on the water slide, had a lovely chicken casserole for tea and spent the evening doing lots of boy things. I wonder which of you had the most fun ?. As you might be able to tell, Harry and the scouts are having a great time. I think they will all come home happy but very tired, afterall it is soooooo tiring having fun!!"

Thank you to Jo (also a Scout Mummy) for sharing this with me.

Missing Harry so much but know he is having amazing time. He is home on Tuesday and then on Friday we fly to visit Hayley Okines and her family for a long weekend, which we are both so excited about..... More to follow

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