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 Post subject: Re: You
 Post Posted: October 28th, 2012, 7:55 pm 
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Joined: December 10th, 2009, 7:51 pm
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Location: Norfolk
Thanks Rob n Trudy that's really good of you

Mark


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 Post subject: Re: You
 Post Posted: March 1st, 2013, 8:57 pm 
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Joined: December 10th, 2009, 7:51 pm
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Just to update everyone, Deryn is currently in Bristol Children's hospital having total body radiation and as of this evening is having a bone marrow transplant, which is followed by up to 7 months in total isolation, don't ask me how he does it but he's still smiling, I'll post up a YouTube clip of him later....


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 Post subject: Re: You
 Post Posted: December 6th, 2013, 11:29 pm 
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Guys & gals I'm sharing this with you as I know a lot of you were kind enough to jump in and support Deryn when I put a shout out for help, I really wish I wasnt typing this, below is a message from Callie, Deryns Mum..

I have written this post time and time again but still I don't quite know how to say what I am feeling right now.

On Tuesday, we were told that Deryn will definitely die in the very near future...

Words that will forever ring in my ears, ...words that I will never forget but they are words that I knew deep down were coming and it was only a matter of time.

I haven't wanted to post anything for a couple of days as I needed to make sure that people close to us were informed first - we have a lot of planning to do now and it's started with arranging for us to move to the Hospice to start his end of life care.

I'm not going to go into too much detail as it's not necessary but there were questions asked of us in the meeting that were the most horrendous questions I have ever been asked...

How, when and where did we want Deryn to die?

Deryn is tired but in good spirits, he knows exactly what is going on and isn't scared at all. He has known for some time that he was going to die and he has made peace with that.

A few days ago, Deryn was very upset because he is in so much pain all of the time and it's depressing him. He told me that he feels as if he's been driving for such a long time and he's running out of fuel...

I just hugged him and told him that I know that, that it's OK and that he's not alone.

He said that he knows that he won't be here for much longer after his birthday, he won't be here by Christmas.

Deryn has been planning his funeral and has made it quiet clear that we should be asked to plan THE most ridiculous things with the time we have left - but what Deryn wants, Deryn will get!

We have been so lucky and so blessed to have known Deryn for the last 14 years and we will be eternally grateful to him for taking us on a roller coaster of a ride - it hasn't been a bullet train but more of a slow locomotive so we have had a lot of time to come to terms with what is now happening to our family.

Not many people get the chance to plan everything, to make sure nothing is left unsaid, the hold, to cherish and to really say goodbye to their child - so many are snatched away by accidents or worse - we are very fortunate.

The hospice is a wonderful place and we will be very well looked after there, Dylan will have all the support he needs and so will Deryn, Si and myself.

In the words of Deryn - 'All is as it's supposed to be'

We want to be able to give Deryn the funeral that he wants and to give him an amazing send off, the kind of send off that he really deserves. He has had little choice in what happens to him over the last 3.5 years - he can have what ever he wants from now on....

Or lives are going to change dramatically once Deryn has gone, our lives will have to carry on somehow and I can't even imagine how we are supposed to do that.

Deryn wanted a charity, he wanted to help others like him have a place that they can go and heal themselves physically and spiritually - we will do this for him!

I'm so sorry that this isn't the news so many people were hoping for, I know so many of you were praying for a miracle, your prayers and positive thoughts have helped immensely - thank you all so much for trying and for supporting us, we really have felt your love for Deryn and it means so much.

I want you all to know that this isn't the end, it's just the beginning of something wonderful that is Deryn's soul - he is destined for bigger and better things...how do I know this? Because he told me. xxx


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 Post subject: Re: You
 Post Posted: December 7th, 2013, 10:31 am 
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Joined: February 17th, 2010, 8:12 am
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Location: Wisbekistan, Cambs.
WOW. It brings home just how lucky some of us really are. We all moan about the most trivial of things but we should really all give back to life what life gives to us.
My thoughts are with his family but also another I know in a similar position.

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 Post subject: Re: You
 Post Posted: December 7th, 2013, 11:04 pm 
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Joined: December 23rd, 2009, 1:46 pm
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Location: Evesham, Worcestershire
:cry: Life can be so unfair :cry:

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 Post subject: Re: You
 Post Posted: February 9th, 2014, 11:44 am 
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Joined: December 10th, 2009, 7:51 pm
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Location: Norfolk
Some of you may have seen on the national news an papers about Deryn as he's become a bit of a celebrity since my last post...

Basically in December he was told the bone marrow hadn't grafted and was moved to a hospice an all messages stopped with 2-3 days max to live. In true Deryn style he's proven everyone wrong is still with us 2 months later has left the hospice an although a very poorly boy is getting out an about an doing bloody well.


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