Harry's world...

Harry's had a quiet few months since the summer, however we did spend a wonderful few hours in September with the children and their families from the Amy & Friends charity. These families live with Cockayne Syndrome (CS) which is also a premature aging disorder. Please see the link for further information.

The few hours we spent with these families was full of love & Harry and I found it especially touching when balloons were released to remember the 'butterflies' that now fly freely in heaven.

We would very much like to thank Jayne, Mark & Amy Garton Hughes for inviting us to share your wonderful retreat.

Meet some of our Progeria Family

I love this photo of Harry with all his friends, who share so much in relation to their types of Progeria. They are all friends who range from the age of 3 all the way upto 17.

Even though they speak different languages they all share amazing experiences through their love for each other and this is shown in the huge amount of hugs and cuddles they give each other.

Progeria Reunion - Ashord, Kent 1st-6th August 2013

What another amazing few days Harry has had with his Progeria family. We have visited 'Ripley's Believe It or Not' in London, followed by a cruise down the Thames. A trip to a rare breed farm and also a BBQ and an evening of games on the lawn.

The farewell party saw a group of young boys known as Vortex Dance Crew show us their moves and musical entertainment from Miss Skoom all the way from Norway.

The children were also entertained by a variety of children's entertainers and a photo session with a magical, mythical twist. There have been ice cream vans, chocolate fountains,bouncy castles and fun swimming in the pool.

Thank you to Hayley's Mum & Dad (Kerry & Mark) for yet another wonderful reunion. Until next year xxx

Arqiva - The Emley Moor Community Award 2013

On Friday 19th July, in a small lift, we traveled up 275.3 meters in 8 minutes to the viewing gallery of Emley Moor Mast where Harry was presented with The Emley Moor Community Award 2013 in recognition of his determination and courage in raising awareness of his Atypical Progeria and in representing his community.

We would like to thank Simon Reevell MP for Dewsbury, John Cresswell CEO,Arqiva, Hannah Ridgeway, The Dewsbury Reporter, David Bentley, The Press and Neil Atkinson, The Huddersfield Daily Examiner for choosing Harry to be the worthy winner of this award and for his gift of a digital radio.

The view was amazing and it was great to share Harry's special moment with him. We would also like to thank a lady called Molly who very kindly gave Harry a gift via David at The Press.

Kids Count Inspiration Awards 2013

On Monday 25th June Harry & I attended the Kids Count Inspiration Awards. Harry was awarded the MP's Special Award Inspire The House Highly Commended Certificate as the Most Inspirational Young Person. Harry was nominated by Simon Reevell MP

To share the evening with outstanding and inspirational young people was amazing. The event was very exciting with the awards being held in the House of Commons on the terrace.

We would very much like to thank Simon Reevell MP for nominating Harry and Linda Lawrence, Founder and Director of Kids Count UK for organizing such an inspiring event and bringing together inspiring young adults.

Calcium/Uric Acid

Harry's left hip has got slightly worse so he's been referred for another course of hydrotherapy. The doctors also looked at a lump that has appeared on his elbow. This could be a calcification or a build up of Uric acid, so Harry's had yet another! blood test to confirm/rule out. He has calcification's on his ears which is also seen on children with classical Progeria. Not sure if these lumps appear elsewhere. A question for me to ask I guess?

Arthritis, Aches and Pains in those pesky joints!

As the warmer weather approaches then Harry's friends come calling for him to go and 'hang out'. This usually means a walk to the local park or to hang around the school field, chilling and chatting. For Harry, this usually ends in him being in pain from head to foot as a result of trying to keep up with his peers. Harry has a wheelchair and Harry occasionally uses it. But like any other 14 year old teenage boy, interested in girls etc he neglects his wheelchair in favour of being in constant pain so as not to stand out and be different from his friends.

His Progeria means he's stared at anyway and he feels doubly stared at if he's in his wheelchair. This is the side of his genetic disorder I despise.

Harry is 14, Harry wants to walk, run, fight with his peers like most 14 year old boys do. Arthritis, joint pain etc prevent him from doing this without it resulting in him limping home, popping a couple of pain killers and collapsing on his bed (This is the Harry his friends don't see, well apart from his closest friends who are happy to stay indoors and chill when Harry is in pain).

I am fully aware that there are other children who suffer far more than Harry and that Harry in fact leads a relatively active life and for that I am grateful but it still hurts that he can not do many thanks his friends can and can not always keep up and that pains me as his Mum as Harry didn't choose to be born with his Progeria but you can be dam sure that he makes up for it with his happy smiley personality and quick witted humor, so for that I am thankful.

Harry has an appointment with his Rheumatologist today incidentally!!!