Sunday, 29 March 2009

Well done Tom and new Welsh Campaign.

A massive congrats from all of us at LLTGL goes to Tom Richardson, who on 22nd March ran the Tokyo Marathon to raise money for LLTGL.

His hard work in both training and fundraising paid of as he completed the race in a fantastic 4 hours and 31 minutes, raising over £700 so far for us. There is still time to sponsor Tom by going to his Justgiving fundraising page: Are you doing a sponsored event for LLTGL? Let us know so we can blog about it!

Donate Wales recently released a new element to their awareness campaign for Organ Donation. The hard hitting TV advert calls for viewers to "Save Sian." You can view the advert by clicking here; what are your thoughts? We'd love to hear what you think of it.

Lastly, our fabulous Advocate Holly Shaw is approaching her big donor day, which she is holding on April 7th. Holly will be in London on the day itself hosting a Donor Desk - are you able to hold one to support her and get people signed up? Click here to find out more.


Monday, 23 March 2009

A plea from Ethan's dad.

Remember little Ethan? He's still waiting for his life-saving transplant, still living in hospital.

His lovely family are holding a Charity auction for LLTGL and Stu (Ethan's dad) has a message for anyone who might be able to contribute or support in any way:

My name's Stu Collins.
My son Ethan was born on the 16th December 2007 with Gastoschisis ( Bowel on the outside). Within 6 hours of being born he had his first of many operations to put his bowel back in.
Sadly the majority of his bowel had died, so instead of the normal childs 150cm of bowel, he was left with just 20 cm's. Because of this he couldn't feed normally and needed to have 2 Stomas and a central line fitted (TPN - Temporary Parental Nutrition) , to give him the right calciums, proteins and fats children need.

Over months doctors were hoping his bowel would work, he would start eating and be able to live without his central line (TPN). His bowel didn't work properly so needed to carry on with his TPN. Sadly the known causes of having a central line (TPN) is that it can cause Liver Disease and liver failure.Ethan has now been in hospital since birth and been on TPN just as long (15 months).

His bowel does not work, and his liver is failing rapidly as well.

He has had other operations from joining his stomas back up to having new lines , and gastrostomys fitted. He has had well over 15 blood transfusions, over 10 platelet transfusions and possibly just over 5 Fresh Frozen plasma transfusions.

In November we were told Ethan with the situation his was in then and how ill he was that he would not make it too Christmas. Well he suprised everyone and is still doing it now.
His only option we've been told is that he needs a Liver and Bowel Transplant, the sooner the better.

Me and my family have been to papers, radio stations etc. to try and get more people on the donor list, not just for Ethan but for other families out there in the same situation.

Me and 7 of my family are doing the Bupa Manchester 10km run and raising money for LLTGL, which has nearly hit 2000 pounds already!! The evening of the race we're arranging a charity auction night, to continue to raise money.So i'm pleading to anyone who reads this that if you now anyone with contacts anywhere who could help us out with anything, that would be fantastic.

And its all going to a fantastic cause which we chose.

Thank you, Stu Collins x

Could you do something to help the Collins family? Please get in touch with us via the website if you can help.

Thank you.

Wednesday, 18 March 2009

Talking Talking Talking

Talking is what we love doing the most, and when it comes to talking about organ donation in particular, well we just can't stop!

Recently we have started an on-going campaign of talks, and we began to expand these into the Transplant Professional sector this week when our transplant-receiving Chairman and Vice-Chair, Oli and Emily, were invited to talk to a varied selection of professionals from all over the transplant community about their experiences.

After a truly humbling introduction, they spoke for half-an-hour about what life is like pre-transplant, the emotions you go through in the fight to regain strength post-transplant and the total elation and transformation that occurs in everyone who receives a successful transplant.

Speaking from their personal experience of transplants at Harefield Hospital, the pair spoke with feeling about how important the work of all the transplant community within the NHS is to the survival of people on the list. As well as being eternally grateful to both of their donors, Oli and Emily spoke of feeling a similar debt to the surgeons, doctors, nurses and all the staff at the transplant hospital for their ceaseless support, both physically and emotionally through the hardest journey either of them have faced.

We’re very much hoping that this kind of talk – explaining to medical professionals just how much of a difference their work makes and putting a human face to the positive results of all that they do – will become a mainstay of the work that we do. It’s not just about convincing people to sign the organ donor register, but helping professionals to realise that even when they’re having a bad day, everything they do serves to benefit the lives of countless people who rely on them to turn their lives around.

From everyone at LLTGL, we want to give a big shout out and massive vote of thanks to everyone who works so hard in the transplant community to make the gift of life a reality for so many people.

Tuesday, 17 March 2009

Can you help out at Holly's Donor Desk?

Our super-North West advocate Holly Shaw has been doing a tremendous job after you all helped her to reach the final 20 of Channel 4's Battlefront Campaign, way back in November.

To mark World Health Day (7 April 2009), Holly is organising a 'Donor Day' to encourage more people to sign up to the Organ Donor Register. The aim is to talk to people about Organ Donation and encourage them to be pro-active and sign up.

Holz has come up with the totally fab idea of "Donor Desks" dotted around the country, with the sole aim of getting people signed up and accosting people to chat about organ donation and hopefully correct some of the myths floating around.

If you'd be willing to put on a stall, head on over to this blogpost where she kindly explains exactly what you need to do to get involved. We reckon the more the merrier, so if you have a few hours to spare, let her know!

Monday, 16 March 2009

Will they respect my body after I'm dead?

One of the most important tasks we face here at LLTGL is quashing the many myths and fears surrounding organ donation.

This was brought home to us from the results of the recent survey conducted by NHS Blood and Transplant. Over 5,000 people responded to the survey, with 90% supporting organ donation and transplantation, but of those who were undecided, the greatest concern regarded how their body would be treated both before and after death.

One of people's greatest fears is that they won't be treated properly once they were identified as an organ donor. However, as Dr Paul Murphy, an Intensive Care Consultant in Leeds and NHSBT's National Clinical Lead for Organ Donation, explains:

"we have particular safeguards in place to ensure that staff who may be subsequently involved in transplantation have no involvement in the care of a patient who might become a donor when they die. Donation only becomes an option that we consider when death is inevitable"

The other main worry pinpointed was whether the body would be treated with respect after death. Dr Murphy went on to say:

"I cannot tell you just how much respect and honour my staff have for patients who donate organs after their death. Donors, and their families, are very special to us, and we do everything that we can to maintain an individual’s dignity throughout - why would we do any less when you consider the tremendous gift that they are making? "

To find out more about the process of donating organs, from how seperate specialist donor coordinators come to talk to the family, through to the retrieval operation and beyond, you can read about Liz Waite, one of eight donor transplant co-ordinators covering the central belt of Scotland, who has chronicled a "day in the life of a donor coordinator"

You can also pop on over to a special section on our website, "Facts and Info" where we have answers to some of the most common FAQs about organ donation

Everybody involved in transplantation, from surgeons to recipients and the families of those who have died waiting, knows just how special all donors and their families are. We hope to continue letting people know that organ donors really truly give the gift of life, and are cherished as such every step of the way

Sunday, 15 March 2009

A story to make you smile and cry.

Remember little Bethany?

She's doing brilliantly and adjusting well to her new life with a healthy functioning liver. Her mum has made a wonderful video about Bethany's transplant journey. In it you'll see the Robyn's Rainbows her and her little sister Eloise received.

It's a beautiful video with a very strong message. Let's hope the awareness raised by Bethany's mum's stunning photos help bring about more happy endings.

View this montage created at One True Media
Bethany's Transplant Journey

Wednesday, 11 March 2009

This is why we love transplants

We are constantly amazed at what a huge difference transplants make in the lives of people waiting for that gift.

This is Oliver Crawley, a charming young lad with an amazing story. Oliver was born with very badly damaged kidneys and thus lived most of his first 8 years in hospital, with tube feeding, lots of medications, not being able to eat, slow growth, lack of energy and almost constant feelings of being sick.

Oliver finally received a life-transforming, sparkley new kidney from his lovely mum 4 years ago (naming it Brian!) and since has grown into a sports-mad athlete competing for medals at the British Transplant Games. He's taken part in a wide variety of games and has recieved several medals, including gold 2 years in a row for Table Tennis.

Oliver has undergone such a dramatic transformation that he was given the great honour of being chosen to represent the UK at the World Transplant Games in Australia in 2009 at the sprightly age of just 12 years old, the minimum age for selection. The Crawley family are attempting to raise money for their visit through Transplant Sport UK, including the cost of flights and training, so if you'd like to help (or read more about his story) please pop on over to his fundraising page at


Wednesday, 4 March 2009

Tom's running for us in Tokyo


The totally awesome Tom Richardson is helping us out by running a marathon for us in Tokyo in just a few weeks!

If you'd like to show your support, you can head over to his facebook page here

Or... if you're feeling flush, why not whizz him over some pennies at his Justgiving page here:

I know everyone is a bit strapped for cash at the moment, but we feel he deserves massive support for all the effort he's putting in on our behalf!

Tom: If only we could be in Tokyo to cheer you on!!