Wednesday, 26 November 2008

It's not just about saving lives...

Meet Sophie. Isn't she beautiful? She is (indirectly) only here thanks to the Gift of Life.

Peter Williams was a young healthy dad when he was struck down by a sudden virus which attacked his heart. Suddenly he went from being an active father and husband, to a dependant housebound and very sick man, who was in urgent need of a Transplant. Peter had a machine called an LVAD implanted, which essentially took over the work of his damaged heart and kept him alive whilst the family waited and hoped.

Two and a half years later, with Peter severely weak and now starting to suffer strokes, that call finally came. You can read more about the family's journey on his wife Sarah's blog.

Thanks to a complete stranger Peter is an active daddy once more. His children will grow up knowing their dad as a lively part of their family, not as a distant memory of an ill man that waited for a transplant that never came.

We always think about the patient - the person who is saved directly by the transplant - but it isn't just them it affects. Peter's whole family has been tranformed by this kind act. And a few weeks ago, the newest addition to this happy family, gorgeous little Sophie, was welcomed into the world.

Who knows how many lives you will transform by signing the Organ Donor Register; it's not a one off life-saver, the ripple effects are unlimited.

Find this entry motivational? Here's how you can help. Email the link to as many friends and colleagues as you can and ask them to consider taking 2 minutes to read it and then maybe to click here to sign the organ donor register.

Think about it. Talk about it. Do something about it.

Thank you x

Tuesday, 25 November 2008

A dance extravaganza!

A few weeks ago LLTGL were privileged to be invited to speak at the Kalaalayyam festival of dance held at Watford colosseum on November 1st. Kalaalayyam is a dance school that promotes Bharatanatyam, a classic dance form from the Indian state of Tamil Nadu. Raising awareness of the need for more organ donors from the South Asian communities in the UK is really important, so it was a perfect chance for Emily to use her magical powers to speak of the desperate need for more transplants to the 1700-strong audience drawn from Brent, Harrow, Watford, Lewisham and Coventry boroughs.
Em spoke for about 15 minutes and showed a video featuring Nehal Shah (one of our lovely advocates who is currently waiting for a kidney) and Nyila and Zulf Parveen who sadly lost their young son in the face of the severe shortage of organs. The video had an intense affect on the audience and you could hear the sadness of the viewers as Zulf broke down in tears on camera, talking about the son he'll never see again. We'd really like to thank Nyila and Zulf for sharing their story and allowing us to tell it, for we watched hundreds of audience members leave clutching organ donor register leaflets and cards.

Monday, 24 November 2008


Our lovely friend Jacqueline Didsbury emailed us yesterday with some totally amazing news!

She has been busy amassing a small army of supporters to walk along the Fife coast from Elie to Leven and raise us some lovely money to help keep promoting transplants! Having lived in Fife for a year, I am totally jealous as the coastline there is stunningly beautiful and one of my favourite parts of the whole of this lovely country-- I'm sure it'll be a great day for all!

Even better still, Jac has roped Sarah and Gordon Brown in-- and they sponsored her £100! Check out her Justgiving page for the proof!

Friday, 21 November 2008

Opt out, working hard, and great news.

Apologies for the delay in updating - this week has been frantic for all team members but we are working very hard honest!

Firstly backtracking to Monday's news. Our official reaction to the ODTF's conclusion on an Opt-Out System can be read here on our website. There was some fantastic Media coverage throughout the day including Emily and Nyila on This Morning, Sarah Milne on ITV and Channel 4, and various others on their local news. Thank you to everyone who gave an opinion and helped keep the focus on Organ Donation and what a fantastic gift it is.

Very exciting news yesterday when Sarah texted to say William had just gone into Theatre for his small bowel transplant! It's very early days yet but so far he is in ICU and doing well. Please keep him and the family in your thoughts. Perhaps if you want to do something, you could talk to someone about his story and remind them that small bowel is not listed as an organ on the organ donor register, so in order to help someone like William you would have to tick "any tissues and organs".

The LLTGL Team had a very lengthy meeting on Saturday to touch base and ensure that all aspects of the Charity are being covered to move us forwards. These are very exciting times for us at LLTGL and we cannot thank everyone enough for their ongoing support as we grow as an Independent Charity.
Holly's Battlefront campaign continues to do really well; Emily is still helping her out and a further two people are coming on board as Holly's keep checking back on her campaign page to see how she's doing and what she's up to and don't forget to leave her a message to spur her on!

Sunday, 16 November 2008

ODTF comes to a decision.

The Organ Donor Task Force (ODTF) will announce its official decision on the suggestion of implicating an opt-out system tomorrow morning.

The result has actually already been leaked to the press but we will write a proper entry tomorrow after the official announcement.

As always, the opinion of our fab Trustees is being highly sought after by various journalists, with potential appearances on ITVs This Morning, ITV News, and perhaps more...

keep your eyes peeled for us!

Monday, 10 November 2008

The word continues to spread!!

Last week, our very fabulous advocate Lisa Muscutt continued to spread the word through our series of talks to various interested parties with a presentation at Hammonds, a leading commercial law firm based in London. This was a really exciting opportunity for us to diversify our talks even further, and Lisa did a sterling job by handing out various leaflets about donor awareness and showing a DVD of herself in the Brompton hospital before her transplant, talking about her struggle with six false alarms and the transformative affect the transplant had had.

Many of the 40 people that attended had tears in their eyes as Lisa talked so movingly about her CF treatments and how without the generosity of a complete stranger she would not be here today.
Our main aim here at LLTGL is to get people to think and talk about organ donation, and although Lisa says that she found the experience a little nerve wracking, we at LLTGL are so proud of her for her courage to talk about her transplant experiences and make people think hard about signing up to the organ donor register.

Sunday, 9 November 2008

Big thanks to the lovely Pauline from Donor Family Network

Our chairman, Emma, has been a bit poorly recently, so we were really chuffed that Pauline from the Donor Family Network was able to step in at the minute to give a presentation to paediatric nurses at St. James hospital in Leeds.

Giving talks is one of the ways in which we feel we can make the biggest difference, and such 'study days' is an increasingly important route through which we are getting the message about transplantation out there to people on the front-line of medicine. Pauline did a fantastic job of integrating both her experiences from a donor family point of view, and the experiences we at LLTGL have had in waiting for a transplant.

This unique approach to talking about the importance of transplants was very well recieved, so much so that Pauline was invited back to give a talk at a similar study day in Blackburn at the end of November. We can't thank her enough for integrating both sides of the transplant story, and it is fabulous to have another charity working so well with us.

Friday, 7 November 2008

For the first time since our inception in March this year, Live Life Then Give Life is taking part in a mass-sponsorship charity event. Over a dozen runners from across the country will be dressing up as miniature, slimmer versions of Santa Claus to run the annual 5km run around Greenwich Park on Sunday 7th December 2008. The team will include LLTGL Trustee and two of our advocates (Nelly and Audrey) as well as others touched in some way by transplant.

The sponsorship page for the run has just gone live courtesy of our friends at Justgiving. You can sponsor the team or any individual at Be sure to make a note of who you're sponsoring in the comment section, be it an individual, a group of individuals or the team as a whole so that we can all keep track of who has supported us and we'll know who to thank! And anyone living in or around London, you must come on down to Greenwich park and give us a shout as we all try our best to get round without going the colourof our suits...;)

Thursday, 6 November 2008


Fantastic news to greet you with this morning LLTGLers!

Holly Shaw, one of our Fabvocates and hardcore campaigner has won Channel 4's recent competition to earn a place as the 20th Battlefront campaigner!

Now the campaigning really begins, but as Holly is still in hospital waiting for her brand new kidney to wake up and start behaving, our very own Emily is going to step in and help get it all started.

Please do help support Holly in this and spread the word about her fantastic work; we're all really proud of her here and wishing her lots of success with her Battlefront campaign. Don't forget, your support will help! To join in and to find out more about how to help promote Holly's campaign on blogger, bebo, facebook, myspace etc... just go to Holly's battlefront page


Monday, 3 November 2008

An emotional but inspiring day.

On Tuesday, Emily and Oli drove up to Coventry to visit Nyila and Zulf - a very brave couple who had agreed to speak to us on camera so we can use their story for raising awareness. Fantastic stuff.

At LLTGL, we come into contact with all sorts of incredible stories, many of them joyous as we get to witness people starting an incredible new life thanks to the gift of organ donation. However sometimes sadly the endings are not as we would like. Nyila and Zulf's son, Ubaid, developed complications with the digestive system and liver when he was born. He lived in hospital for most of his life, on many treatments including TPN to keep him alive. Nyila and Zulf were told that Ubaid's liver was failing and he was put on the transplant list.

They waited and hoped, week after week, staying positive that the call would come. But 8 months later, Ubaid ran out of time. They spoke clearly and passionately about their son, and Emily talks on her blog about how emotional it was to interview a couple for whom the grief is still so raw and so new. How the couple found the strength to do that interview is beyond us, but we are so very grateful that they did. We will hopefully get the video up here soon for you to see how powerful their story is.

It is, of course, a reminder that sadly children need transplants too. Children like William, like Bethany. The concept of organ donation here becomes even more emotionally fraught; could you donate your child's organs if the time ever came? It's a consideration I am sure none of us would even like to contemplate, but there are parents all over the UK with very sick children in desperate need of a transplant who need you to take a moment to think about that question.

Thanks to Niyla and Zulf speaking out about their story, lives will be saved. It is too late for Ubaid, but his story will motivate and inspire people to sign the organ donor register to try and prevent this happening to other families. And that is a truly special legacy indeed.