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- posted-in Changing how an ambulance is classified in English law: The curious case of Paul Bex
My daughter had a heart transplant in 1989, if it wasn’t for people like Paul she would had died….as it is she is alive and well and now has a family.
If the chief constable of LINCOLNSHIRE wants to make sirens and lights illegal, I hope he or a member of his family needs a transplant and time runs out because the Ambulance had to go slow…. - posted-in Changing how an ambulance is classified in English law: The curious case of Paul Bex
I’ll be keeping a check on how it all pans out….lots going on indeed!
Just wanted to let you know my email was sent to Nicola Sturgeon MSP (Scottish deputy first minister and secretary for health & wellbeing) but she passed it onto Jim Dale to respond, who I assume must be a representitive of our police. - posted-in Changing how an ambulance is classified in English law: The curious case of Paul Bex
Watch this space! Just updated the page with lots of news, will be interesting to see how some of the other longer term letters pan out…
- posted-in We never thought much about organ donation…until Kian’s liver & kidneys stopped working.
lovely website. I think Kian’s story is a great victory about what organ donation can do.I know Kian’s. Seen him and his parents through good and bad days. Witnessed this family life style before the transplant: the feeding through a tube every three hours for over 2 years and going three times a week to hospital for dialysis. And I saw kian’s after the transplant, so different. He ate for the first time through his mouth few week after the transplant like he’s done it all his life. And the running, going out as he doesn’t have to be fed every 3 hours. He’s just looked at you and smiled like everything’s all right.So if I can add a last thing, It’s :register because you never know who will need a transplant and it is really changing lives.
+1 - posted-in Changing how an ambulance is classified in English law: The curious case of Paul Bex
Any update on this yet? Seems like a good reply from Oliver Head but hard to know what will come of that.
- posted-in Part 7: Now and the future.
That’s fantastic that you are helping to spread the word and awareness about organ donation – one of the main problems is just just getting people aware of the issue, especially in children.
Please do let us know how you get on with the presentation and what questions you get from the class!
Philip - posted-in Part 7: Now and the future.
thanks for the story. it amazing to see, how a donation of a organ can help someone’s life. im presenting a organ donation speech to my class and im going to use Kian’s story as an example
- posted-in ‘Sell organs to save lives’
I agree to permitting the sale. It would definitly help getting more organs.
- posted-in Donate Money
[...] fantastic charities out there doing great work in the transplant community – please visit our donation page to do so [...]
- posted-in We never thought much about organ donation…until Kian’s liver & kidneys stopped working.
Phil, great site, a great way to disseminate the message, The difference in Kian since the transplant have been staggering. Congratulations on getting mentions on BBC’s website too, hope this help to raise awareness and numbers of people joining. Take care.
- posted-in Press
[...] In the Press [...]
- posted-in Our family made the choice of organ donation when my little boy, Calvin, died after a road accident in 2008. He was 11.
such a brave lad, i had two liver transplants one in 2006 the other in 1995, i like to thank Calvin family to for giving the gift of life, he sounds such a great lad, r,i,p, Calvin, and thank you again xxxxx
- posted-in Our family made the choice of organ donation when my little boy, Calvin, died after a road accident in 2008. He was 11.
I’m Calvin’s sister. Please can you visit his website. thank you
calvinleary.net
- posted-in Our family made the choice of organ donation when my little boy, Calvin, died after a road accident in 2008. He was 11.
Very touching. I am an organ recipient, so I have very much to be thankful for. Thank you for thinking of others during your period of great grief.
- posted-in Register Now
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- posted-in Press
[...] In the Press [...]
- posted-in Part 7: Now and the future.
you have no idea how this has affected us, going through all the things has reminded us of how summer my grandaughter has also suffered. it has also given us so much more hope. as time is runing out for summer. i commend what you are doing with this site, raising awarness is so important geting things out to the public. kian is a very brave little boy and you are courageous parents i only hope we will be as strong thank you so much tina xxx
- posted-in Our 11 year old daughter chose to donate her organs
This story is amazing…its a lesson for all of us to come forward and do it. If a 11 year old can why not me????
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- posted-in Part 1: Open heart surgery at just 8 days old.
[...] Part 1: Open Heart surgery at just 8 days old. Part 2: Heart failure and waiting for a new heart. Part 3: Now and the future. [...]
- posted-in Part 2: Heart failure and waiting for a new heart.
[...] RSS « Part 2: Heart failure and waiting for a new heart. [...]
- posted-in Register Now
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- posted-in Part 2: Heart failure and waiting for a new heart.
[...] Part 2: Heart failure and waiting for a new heart. >> [...]
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- posted-in Part 7: Now and the future.
What a lovely story, thankyou for sharing it with us. You have all had a difficult journey especially for Kian and it shows that transplants do work.Your son is a credit to you both and the donor family and my heart goes out to you all. My daughter Jade had a heart transplant 14 years ago at Great Ormand Street Hospital and without her donor she wouldn’t be here today. I really hope that this site helps and we wish you the luck in the world.
Sue xx - posted-in Register Now
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- posted-in Expanding fast – 114 page fans and 28 group members in 3 days
[...] This post was mentioned on Twitter by Donors Save Lives. Donors Save Lives said: It's been a busy few days! 114 fb page fans. Site's only been live for a few days: http://www.donorssavelives.org/?p=317 [...]
- posted-in Joan Smith: Why are we quite so squeamish?
I was so taken by Joan’s feature in The Independant I wanted to tell her so..she replied
)
Included in her message was..
“I signed up to be a donor years ago, it seems to me such an obvious thing to
do, and I hope this consultation gets more people onto the register. I am going to remind all my friends that they should do it, I think word-of-mouth
(and sites like yours) is very powerful” - posted-in Part 7: Now and the future.
I knew nothing about Kian until a wee email from his Dad arrived in my mailbox this week yet Kian and my son Aaron have both had a combined organ transplant(Aaron had a combined liver & small bowel transplant) at Birmingham Childrens there’s a fair chance we’ve passed each other on the liver unit!
What a life journey Kian has gone through and it’s just wonderful to see him now looking so well and climing on his new climbing frame for his birthday way ta go wee man!
Aaron’s donor needed to be a child which was really tough,I am in touch with his “donor Mum” her little boy was only 10 when he died tragically,his gifts of life saved 3 other children lives a wonderful positive legacy out of such tragedy.
I know you know transplants save lives but they are not a cure and many kids need a 2nd transplant..we need more registered organ donors and Philip this is a wonderful way to encourage people to do just that. Aaron is 13yrs old 10yrs post transplant & doing really well,I truly hope Kian does just as well,our kids are a credit to those who gifted them life
brightest blessings
Cat x - posted-in We never thought much about organ donation…until Kian’s liver & kidneys stopped working.
Just want to say you guys are amazing with what you have done for Kian and how far you have come. The website is a brill idea and I hope word gets around so more and more people are made aware.
- posted-in Part 2: Did you not realise there was a problem?
Despite seeing you all at BCH after Kian’s transplant, I really had no idea of the heartache you have all been through. Your incredibly honest account was moving to say the least and I cannot begin to imagine how I would cope with one of my two going through all that. Like so many children with serious illnesses, I found your little guy quite inspirational. I have meant to sign up for the donor register so many times and am so glad you gave me the final push I needed.
- posted-in Joan Smith: Why are we quite so squeamish?
[...] This post was mentioned on Twitter by Paul Lucas, Donors Save Lives. Donors Save Lives said: new post: Why are we quite so squeamish? http://www.donorssavelives.org/?p=309 [...]
- posted-in Part 2: Did you not realise there was a problem?
Hi Anil, and thank you so much for such an open and honest comment. Contrary to what everyone might expect, I fully understand that some people are hesitant about signing up, even though they know the good that such an act would do. I see the role of this site as seeking to encourage signup by holding up the real world in front of people to show them exactly what the consequences of inaction are. That said, I would always seek to challenge and persuade someone in your position rather than make them feel they have to sign up.
You are quite right that I think there is an issue with people (some of whom are very active in other charities) not wanting to think about their own mortality, and we can only change that by confronting it head on. Perspectives and attitudes can be changed with time – just look at how our society has changed in so many other ways over only a few years.
We just all need to keep working at it
- posted-in Part 2: Did you not realise there was a problem?
Kian’s story brought tears to my eyes, especially as I am Kia
n’s surrogate Uncle. Like both of you, I too would never have thought of organ donation until today. Despite my desire to donate my organs, I am still contemplating whether to sign up. Your website will certainly help me come to a decision. ONe could ask, what does it matter when you are dead, reference your organs? Well perhaps we do not think of the fact that when we are dead we can still save ad contribute to someone’s lives and the living. We can try and extend and improve the quality of life for the several children and people that unfortunately are in Kian’s position as evidenced through the recent GOS BBC documentary. We perhaps do not want o think of organ donation because we do not wish to think about death. That said I believe that we all (me included) need to change our thinking with reference to life, death. - posted-in 20 Apr: An Imperfect Cure: Documentary on Renal failure at GOSH
phew, well that was a bit close to the bone in some sections. Imaan, glad you got those kidneys sorted at last!
- posted-in We never thought much about organ donation…until Kian’s liver & kidneys stopped working.
lovely website. I think Kian’s story is a great victory about what organ donation can do.
I know Kian’s. Seen him and his parents through good and bad days. Witnessed this family life style before the transplant: the feeding through a tube every three hours for over 2 years and going three times a week to hospital for dialysis. And I saw kian’s after the transplant, so different. He ate for the first time through his mouth few week after the transplant like he’s done it all his life. And the running, going out as he doesn’t have to be fed every 3 hours. He’s just looked at you and smiled like everything’s all right.
So if I can add a last thing, It’s :register because you never know who will need a transplant and it is really changing lives. - posted-in We never thought much about organ donation…until Kian’s liver & kidneys stopped working.
Thank you for this moving site and story. I wish you success with increasing sign-up to the donor registry! That would be a fantastic achievement!
- posted-in Part 6: Climbing back up the hill.
I think I should add a comment around this point in the story. I was working with Phil while he was on a laptop in the hotel or cafe or where ever he found space to or time to. I saw the stress the whole thing had on him and Kian, and I had seen the pain Kian had been in on a daily basis running up to the transplants. I have no idea how hard it really was for him, but it appeared a lot tougher than I ever imagined it would be. I knew it would be tough, after all this is his son!!! But I never imagined it would be as tough as it seemed, and I am sure it was much tougher than the brave face Phil put on throughout the whole thing. Having seen Kian a few months back, having witnessed the difference it has all made to Kian’s life. Phil, this site is such a good idea, and the work you are doing to promote awareness is superb! I am so happy that Kian is doing so well.
- posted-in Part 4: Renal failure. The reality of Dialysis for a small baby hits home.
Thanks Imaan, can’t wait to see you and the others on the documentary!
- posted-in Part 4: Renal failure. The reality of Dialysis for a small baby hits home.
you guys have coped so great with Kian and i hope the transplants are going well! It’s fantastic that your raising awareness like this!!
Good Luck! - posted-in We never thought much about organ donation…until Kian’s liver & kidneys stopped working.
A warm welcome to our website that deals with the emotive issue of transplantation in children. We know Kian is not unique so if you have a story to tell please leave a comment or better still email us!