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Harry's Castle In Amsterdam.

March 16, 2017

 

 

 

Harry's 18 and has a bit of a thing for Ed Sheeran and his music. A very big thing!

Harry has Centro-Nuclear Myopathy, has never eaten a full meal in his life as he gets fed through a tube overnight, he's an artist and zips around in his wheelchair with the skill of a racing driver.

Harry wasn't meant to make it as a baby. Or as he got older. The odds are stacked against someone born with CNM making it but many operations later Harry has fought those odds and at 18 got a visit from Given To Live on Monday.

Mum, Jill, and dad, Gary, said he had a doctors appointment at Martin House where Harry has been going since he was two for care and having met some of the staff he also was getting a lot of love.

Instead of a white coat and a stethoscope this doctor had a GTL hoodie and a poster tube. Confusing! Confusion gathered pace as Harry saw the poster, a poster we talked him though explaining that Harry, Ed Sheeran and Ziggo Dome, Amsterdam all together meant exactly that...Harry is going to see Ed Sheeran in Amsterdam.

Harry's condition is life limiting and he keeps defying the odds. And one thing dad, Gary, has said a number of times is Harry will often say he just wants to be normal. Do normal things, not be stuck in a chair for life, go for a walk, be able to eat a full meal without it being life threatening. He loves Martin House, the staff and how great they are to him and the incredible facilities they have.

Harry gets depressed and has been having a tough time recently so the timing of our visit worked well. Once the stunned silence wore off and a few tears had fallen a smile broke out, wider and wider. Only interrupted by Harry telling his dad he knew he was up to something as time and again Gary had to leave the room at home to have a conversation with us to get details cleared up, logistics sorted out. Then more smiles, shakes of the head in disbelief and checking the poster again to see that it's true.

It is true, Harry! You are going to Amsterdam to see Ed Sheeran. You can visit galleries which artist Harry will love. You can sit in the sun by the canals. Just ask, it's GTL's job to take care of you. You're in a lovely hotel with a pool so you can swim, sit by the pool...or not, it's your trip, you're choice.

Harry's in Amsterdam for three nights and has tickets to the first of the two shows at the Ziggo Dome. We're hoping for a small miracle and somehow we can find tickets to the second show because we reckon seeing your favourite singer twice when they're in the same town as you is normal.

*************************

We'd like to thank Walker's Solicitors in Rotherham and the Stephen Finan Travel Trust for their help in making Harry's dream come true.

The Jet2 Special Assistance Team for making the process of booking a flight with a wheelchair so easy and stress free. You've treated Harry and family with respect and as people who need support and not a hindrance. Thank you.

Mojo Concerts - you're help with getting Harry's tickets to the show...made a dream come true.

http://www.facebook.com/mojoconcerts

Paul at the Park Plaza, Amsterdam, thank you. Thank you for all your help and we know we'll be in great hands during our stay.

https://www.facebook.com/victoriaamsterdam/

Caroline and Laura at Martin House. The work you do is so valuable and means so much to so many, thank you. And whoever makes that chocolate cake, definitely on the favourite people list! www.martinhouse.org.uk

Emily Trott, your poster is perfect! Thank you.

And as always, to those of you who support GTL by donating, sharing our stories, we can't do it without you. Thank you, thank you.

To find out more about Harry's condition -

myotubulartrust.com

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