Thursday, 23 December 2010

Reflecting on 2010

What a year 2010 has been; full of ups and downs, triumphs and tears. We will be closed over the Christmas period from 24th December 2010 till Monday January 10th 2011. Before we go, we look back and reflect at some of the key moments over the last 12 months.

We started the year with a bit of a rollercoaster, where hearts were uplifted when our gorgeous Jess got her call for Transplant just after Christmas. Sadly, 4 and a half years of waiting meant Jess' body was just not strong enough, and our inspirational girl passed away on 12th January 2010. At this time of year, our thoughts are with the donor family who tried to save her life, and with her family, who will be feeling her absence very much this Christmas.

There are so many awareness-raising opportunities we could talk about, including dozens of talks, stands and presentations. 2010 saw more fantastic work from our advocates and our Ambassadors Rachy and Tor , as well as Trustees attending events such as the BTS congress, British Transplant Games and the ETCO conference to name a few. Our media campaigns have continued to expose millions more people to the subject of organ donation, and we're hugely grateful to all those who helped by sharing their life stories with us this year.

Our fabulous fundraisers were also on top form in 2010! From organising cake bakes to running marathons, from a charity single to an entire music festival - thousands of you across the UK did your bit to help us continue raising awareness and saving lives.

Thanks to organ donors like George and their families, hundreds of people like Rich are getting ready to celebrate their first Christmas with a new lease of life and hope for the future. However due to the shortage of donors in the UK, there are around 1000 families like the Barr family who are now preparing for their first Christmas with someone missing; someone whose life could have been saved by a transplant, but who ran out of time.

We are looking forward to 2011 as it brings with it new opportunities to booster organ donation awareness and raise the profile of transplantation and its ability to transform lives. With your support and hard work from all of us, we can get even more people signed up to the organ donor register, increase the number of transplants that take place, and save even more lives.

Wishing all our supporters a wonderful Christmas, and a happy and healthy 2011.

Love from us all,

The LLTGL Team


Wednesday, 22 December 2010

Our Em

If any of you have ever had the chance to hear our Chairman Emily speak about her life then you will know what an inspirational person she is and what an inspirational story she tells.

We at Live Life Then Give Life believe that one method of raising awareness that triumphs above all others is telling a real life story. Emily works constantly and tirelessly to save and improve the lives of people on the transplant waiting list and the way she does this best is by talking (well, are you surprised?) This week she has been on BBC Radio Surrey's breakfast show as part of their life stories section.

Emily's interview has been split into 4 parts with the final part being aired on BBC Surrey tomorrow at 9.40am. The other 3 parts can be heard on IPlayer by following the links below:

Part 1 - 53 Minutes in. - Emily talks about life before transplant, using a wheel chair and trying to hold onto her indpendance while Cystic Fibrosis compromised it.

Part 2 - 1 hour 49 Minutes in. - Emily talks about being given 12months to live, her work for Live Life Then Give Life and life on the transplant waiting list.

Part 3 - 1 hour 49 Minutes in. - Emily talks about life after transplant 4 years on and her future, thanks to her donor.

Well done Emily, you are and continue to be an inspiration to many people and we are so pleased to have you as our Chairman x

Monday, 20 December 2010

Tor's Christmas Wish - campaign update

It's been just 7 days since we launched our Tor's Christmas Wish campaign, and it has already been attracting a huge amount of attention!

People all over facebook have been sharing her story and urging others to do the same. Upon reading her story, Niall Murphy set up this facebook page and donated some advertising space to raise the profile even further - thank you Niall!

Tor says she has had more messages than she can keep up with, and has been completely overwhelmed with the support and kindess from people touched by her story.

The biggest success so far has been on Twitter, where not only have thousands of kind souls been retweeting our messages, but the celebs have been getting involved too! TV presenters Philip Schofield and Ben Shephard, actress Tamzin Outhwaite, Absolute Radio DJ Christian O'Connell, Loose woman Zoe Tyler and actress Sierra Bogess are just some of the big names that have been helping us spread the word. Special mentions to Sarah Brown, Duncan Bannatyne and Peter Jones who have not only retweeted but have also urged others to do the same and sent messages of support to Tor.

Here are a few of the tweets from those moved by Tor's story that prove that campaigns like this really can make a difference:

"Thanks to you and this very brave young lady I have just registered to donate all my organs for transplant in the event of my death! Thanks for raising awareness !"

" I have just received my donor card, thanks to the Twitter awareness campaign. I hope lots more people take the time to apply."

"Have signed up for organ donation after seeing your xmas wish - best of luck with everything. Hopefully my bits are useful one day!x"

"Read your story tweeted by @DuncanBannatyne Praying that you get your wish lovely lady. My mum helped someone 2 see after her death xxx"

"Have just signed the register. Sending you lots of love and best wishes for Christmas and beyond x"

We want Tor's plea to get as much exposure as possible - could you help us? Do you have a media contact or a celebrity pal that might support Tor and help her Christmas wish come true? Please get in touch if you have an idea at info [at]

Thank you again for all your support.


Wednesday, 15 December 2010

A Gift of a Lifetime

We received this lovely poem from May Thomson, who's been following our Christmas campaign for Victoria Tremlett on Twitter. You too can follow Tor at @tor87 or the campaign #torsxmaswish

A Gift Of A Lifetime

We all have hopes and fears,
Many of them can reduce us to tears,
All reading this once dead are spares,
Our ups and downs of daily life
Imagine needing an Organ to stay alive,

Most of us do not want to consider,
What happens once we are dead?
Think Donate our Organs,
Then others may lead a life,
That’s is full instead of life in bed,

A Heart to Beat, Lungs to Breathe, and Eyes to see,
All can be used after thee,
So carry a card register on the internet,
Then the recipients can get set,

Improved lives free to live,
So please once you are dead,
Your Organs please please give,
Through time of great sadness,
Bring joy to others instead,

In Twitterland @Tor87 has inspired me,
To ask you all your Organs to Donate,
So others live a life active and free,
Please please fulfil her plea,

The soul moves on the body dead,
By Donating parts live on instead,
So bring joy back to these people lives,
Next time might be one of your own,
That needs that vital Organ to survive.

© May Thomson

Monday, 13 December 2010

Tor's Christmas Wish

LLTGL Ambassador Victoria Tremlett is 23 years old. She's beautiful, clever, passionate and ambitious, but her life is currently on hold whilst she waits and hopes for a double lung transplant.

Tor has been waiting for over three and a half years now, and so knows her time is running out fast. She has decided to make a Christmas Wish, and we need you to help it come true. Please read what this incredible lady has to say and spread the word.

"My name is Tor and I'm 23 years old, however unlike most 23 year olds I am waiting for a double lung transplant to save my life. When I was put on the transplant waiting list I was told I had 18months to live, I have now been waiting 3 and 1/2 years, and it doesn't take much to see I am living on borrowed time.

I use oxygen 24/7 to support my failing lungs, a wheelchair to leave the house, the majority of my day is dedicated to medical treatment just to try and keep me stable. The smallest tasks like getting dressed, combing my hair and brushing my teeth leave me absolutely exhausted and my mum has to help me with everything.

My Christmas wish would ultimately be to get the transplant I so desperately need, but due to the shortage of donors, this may not happen. Without a transplant this could be my last Christmas, and so this December, I want to get at least 5000 people to sign the organ donor register, in the hope of saving lives.

50% of people waiting for lungs will die purely because not enough people have signed up to donate after their death. Each of us has the power to change this statistic. I don't know if my call will come but by signing up you will create chances for so many people facing a death sentence.

Please help me achieve my Christmas wish and give me hope, a future and the chance to see next Christmas.

Thank you."

What you can do:

  • Sign up! It's quick and simple, just go to

  • Be proud about the fact you've signed up! Let people know, especially your next of kin.

  • Pass the message on. We'd love to help her see 5000 new names on the Organ Donor Register by January 1st but we need you to help spread the word about Tor's Christmas Wish.

On behalf of Tor and everyone else waiting, thank you for your support. It literally could save lives.

Thursday, 2 December 2010

Justgiving Awards 2011

Last year, Emily and Matt were lucky enough to attend the first ever Justgiving awards which were held at the RIBA building in London. They had a wonderful time and met and heard about many inspiring individuals who achieve so much through hard work and determination.

Nominations for the 2011 Awards are now open, and you can take a look here! Justgiving say "They're our way of recognising the outstanding individuals, teams and charities who together have helped to raise over £175m for worthy causes this year."

Do you feel we're doing a good job? Maybe you want to nominate LLTGL for one of the categories! And there aren't just awards to recognise the work of charities, individuals who have made outstanding contributions will be featured too.

There are a variety of categories such as youngest fundraiser and the lifetime achievement award that you could nominate someone you know who you think deserves recognition. Why not take a look at all the categories here:

Tuesday, 30 November 2010

Charlene's Project

Charlene was born with the genetic condition Cystic Fibrosis and spent lots of time in and out of hospital during her life for treatment such as intravenous antibiotics. During the last 12 months of her life her health deteriorated and she spent more time in hospital than out with recurrent chest infections.

As hospital stays increased Charlene was unable to attend school, she achieved her AS’s but was too ill to complete her A Levels. Charlene was placed on the transplant list for a lung transplant in October 2009 and instead of sitting back and wallowing, whilst on the waiting list Charlene worked hard to raise the necessary money to build a school in Uganda naming it “Charlenes Project” She visited Uganda in March 2008 and hoped to go back this year but was unable to due to her health.

Talking of her project before her death she said “I loved Uganda and saw how little the children had there. I want to make it possible for some children there to get an education. That way my WAITING will have made their life better.”

Sadly Charlene passed away on 30th October 2010 after a 18months on the transplant waiting list - her time ran out. Speaking of his daughter Charlene’s father Dickie says "She was totally inspirational."

"I'm proud to have known her. In her short life, she accomplished so much more than I or anyone ever will. She never once complained about having Cystic Fibrosis or what she was going through."

More than 10,000 people in the UK need a transplant to save or transform their lives 3 people die every single day waiting for a transplant.

Charlene's father Dickie is now keen to raise awareness of Organ Donation by telling his daughters amazing story and encouraging more people to sign the Organ Donor Register so other families do not have to suffer such a loss like that of his daugher Charlene.

Check out this incredibly moving video of Charlenes Journey.

We are sure you will agree that it is a truly inspirational story about a brave young woman. To read more about the continuing work and the legacy Charlene leaves please visit the Charlene's Project website:

Friday, 26 November 2010

We need YOU to help us raise awareness this Christmas!

With less than a month to go till Christmas, we're getting started on our Christmas Media campaign for 2010! It has been hugely successful every year so far, and the most important element of this campaign is you! We need our supporters who have been affected by transplantation or organ donation to get in touch if they feel they could help us.

What is the LLTGL Christmas Media Campaign?
Every Christmas, we create press releases for volunteers from all over the country who offer to share their story with us and the media. Christmas is a particularly appropriate time as it's a period when we think of giving to and supporting others, a theme that ties in well with organ donation. We then pitch these to local newspapers (and sometimes on a wider scale, if appropriate). Volunteers are consulted throughout and there is never any obligation.

Who does LLTGL need for this?
Anyone affected by organ donation or transplantation! Perhaps you're waiting for a transplant, maybe you're alive today thanks to the gift of a stranger. Are you a donor family member who's keen to help spread the word? Perhaps you're a friend or family member who has been touched by these issues and you want to do your bit. Every story is powerful in its own unique way, and if you think you might be able to help us by sharing yours, we'd love you to get in touch.

OK I want to help, what now?
Email info [at] and we will send you some basic questions which will help us start creating your press release. We will then get back in touch with you to go through the release and ensure you're happy with everything before we go any further.

Facts and figures are great, but it's been proven time and time again that the best way to strike a chord with the public is to demonstrate the reality behind the statistics. With your help, we can enable more people to understand just why organ donation is so important, and why we all need to shout Live Life Then Give Life!

On behalf of the 10,000 people desperately waiting right now for that life-changing call.... thank you x

Wednesday, 17 November 2010

Team Glasgow's Masquerade Magic.

On Friday 29th October, our three Scottish advocates Kirsty, Victoria and Jac (aka Team Glasgow) hosted a glittering Masquerade Ball to raise funds for LLTGL.

The guests arrived around 7pm, donned in amazing masks and beautiful dresses, and sat down to a beautiful three course meal. Team Glasgow got up to welcome everyone and Jac explained the background to the three girls’ stories and why they were here tonight.

As part of the event, each guest received a flower seed packet with the message that these were to be planted in memory of the girls’ donors, and organ donation and LLTGL leaflets were on all tables. The evening also included several incredible singers, masked ballet dancers, an awareness-raising slideshow, a raffle and an auction!

One of the highlights of the evening was Kirsty, who received her double lung transplant a year ago, singing 'My Hero' by the Foo Fighters, in memory of her donor. It was an emotional performance and she got a wonderful response from the assembled guests.

Jac says “The night flew in but everyone seemed to be having a great time and there was a wonderful atmosphere in the room. It was such a celebration of us still being here, still standing and looking to the future - and hoping we can help others also get this opportunity.” You can read the rest of her account here and see a variety of photos from the night here.

The evening was a huge success and this fantastic trio raised over a staggering £12,000 through their efforts and hard work. We are hugely grateful to not only Team Glasgow, but to everyone who supported them in any way.

All three gorgeous girls are only alive today thanks to people who signed the Organ Donor Register. Remember: Think about it, talk about it, do something about it!

Monday, 15 November 2010

LLTGL Away Weekend

On 16th and 17th October, LLTGL held their 2010 away weekend for Trustees and Advocates in Croydon. The rather lovely ASP Events gave us use of their offices for the weekend completely free of charge, which was a huge help!

Representing our Advocate team were Lou, Kirsty, Tori and Jac, the latter three travelling down all the way from Scotland to be there.

The weekend was a huge success and extremely busy, as we tried to cram in as much information, training and brainstorming as possible! It was a wonderful opportunity for the team to get together, to share ideas, facts and information, and just to get to talk face to face - a rare opportunity due to our distribution around the country!
To everyone's delight, our brand new I'd Give You One T-shirts arrived in time for the weekend, and we are thrilled to announce that they are now on sale! You can find out more and order your T-shirt by clicking here. There will also be a Live Life Then Give Life design available shortly.

Kirsty and Matt modelling our new Ts - get yours now!

Wednesday, 6 October 2010

The British Transplant Games

On the 22nd August, LLTGL Trustee Holly Shaw and Advocate Andrea Evans had the privilege of attending the British Transplant Games - not to take part in any races we hasten to add (who knows, maybe next year!) but to host a stand and represent Live Life Then Give Life.

They set up the stand and chatted to various people about Organ Donation, and were obviously speaking to a somewhat converted audience as everyone there was affected by transplantation! However it was great to see some familiar faces such as Bethany Salmon, Catriona Hamilton of Transplant Kids and Pauline Weaver and other members of the Donor Family Network.

Everyone had the same thing in common yet the competition was as fierce as any other event in the athletic calander! Speaking to one athlete James Colbeck, he said “Training for months to compete against similarly able athletes is an achievement in itself, but the competition was fantastic. I am thankful for my background in athletics, but natural thirst for winning isn't enough anymore and for the World Transplant Games in Sweden I will have to work a lot harder. Of course I couldn't be here if it wasn't for all those involved at Manchester Royal Infirmary, friends and of course, my mum without whose gift of life [her kidney], I wouldn't be able to compete at all.”

Andrea and Holly watched races and events and found it heart-warming to think everyone at the games had the same thing in common, they had all had transplants and they wouldn’t be competing (or may not even be alive) if it wasn’t for someone signing the organ donor register and their family agreeing to donation.

Please sign the Organ Donor Register so that more people can take part in the transplant games, but not only that so more people can have a second chance at life!

Think about it, talk about it, do something about it.

Sunday, 3 October 2010

Trekking for Tor

On Saturday 11th September, our fab Trustee Matt and his lovely wife Bex took on an astonishing challenge; to walk 40 miles in less than 24 hours in what they called "Trekking For Tor".

Saturday 11th is a very significant date for Matt and Bex, as their beloved friend Robyn Tainty sadly passed away this day in 2007, when she ran out of time whilst waiting for a double lung transplant.
Setting off before sunrise!

LLTGL Ambassador Tor Tremlett and the loss of Robyn were their inspiration and motivation, as the determined pair set off at an impossibly early hour, across the South Downs.

Tor texted the two constantly, encouraging them as they struggled against wind and rain, but as the day went on, Matt injured his knee, making it even more difficult. About 30 miles in, Matt's knee was extremely painful, but too stubborn to stop, he carried on until he literally could walk no further at 36 miles. The lovely Bex decided to finish the trek on her own, and completed the full 40 miles, meeting Matt at the finish.

The pair did incredibly well and their sheer determination and motivation shone through on a very miserable grey day. They have raised a staggering £1,432 between them, and if you would like to sponsor their fantastic efforts, you can do by going to

Well done Matt and Bex - a fantastic fundraising effort!

Friday, 1 October 2010

Emily speaks at the ETCO conference

From 24 - 26 September, the UK hosted the European Transplant Coordinators Organisation (ETCO) conference for the first time. It was hosted at Cardiff City Hall, and took 2 years to plan. The 500 delegates included Transplant professionals from across the globe, all attending to hear lectures on the latest developments in transplantation and organ donation.

LLTGL had been approached to provide a speech as part of the Opening Ceremony on the Friday, and so Emily was sent along to present the perspective of both a transplant recipient, and a charity campaigner.

Emily's speech was 30 minutes long and during that time she talked about her own transplant story - her fight for survival, life prior to transplant, and life as it is now - and about LLTGL - our aims, our work, our mission.

At the end of the speech Emily showed our LLTGL slideshow, and as she left the stage after thanking the assembled delegates for all the incredible hard work that they do, she received a standing ovation.

It was a hugely successful talk and we look forward to working with members of ETCO again soon - well done Emily!

Tuesday, 14 September 2010

The week that was...National Transplant Week

It was a while ago we know, but we’ve been so busy we haven’t actually had time to blog about what LLTGL got up to!

As always, our biggest contribution to NTW was our PR campaign. Some of you kindly shared your stories with us, so we could, in turn, get them out to regional and national media outlets to raise awareness about Organ Donation and the wonders a Transplant can bring

We had 10 PR volunteers this year, and with the help of PR consultant Sarah Milne, between them they managed to get their story out to over 8.5 million people. Hits included Victoria Tremlett and Jen Grannell in the Mirror, Victoria Glen and Gerard Falsey in the Glasgow Evening Times, Lucy Spaull in the Richmond and Twickenham Times, and our very own Chairman Emily in Boots Health and Beauty Magazine.

We are hugely grateful to everyone who has shared their story with us at any point in time; statistics are helpful, but hearing a real story, a real example of just how important Organ Donation is, can be so much more powerful. If you would like to help us by sharing your story, please get in touch via the contact page on our website.

To help maximise online awareness, we had an image designed which we hoped a few people would share on their facebook pages and twitter profiles. The concept was far more popular than we could have hoped, and literally hundreds of people had changed their profile pictures to the image (below) by the middle of the week.

Throughout NTW, we were tweeting key facts about organ donation and transplantation. Our fabulous Ambassador Victoria Tremlett worked extremely hard sending tweets to celebrities, and got a fantastic response. Thanks to Tor, the LLTGL tweet team, and other supporters, celebrities promoting NTW included Duncan Bannatyne, Jason Manford, Lorraine Kelly, Sarah Brown, India Knight, Bill Bailey and Sheridan Smith.

The celeb supporters’ combined followers (therefore people who can see their tweets) add up to over 1.8 million, so a fantastic result! Hundreds of you also retweeted our messages (our most popular one was retweeted 167 times), and we are hugely grateful to each and every one of you for helping us spread the word.

A massive thank you to every single person who helped us support National Transplant Week - it was a huge success and really pushed Organ Donation into the spotlight. We're already looking forward to next year!

Monday, 13 September 2010

Fantastic Fundraisers: Team Jess

We've had some incredible fundraising efforts going on this week, here's the first one that took place on Sunday 5th September.

Trustees Emily and Holly who were part of Team Jess

You may remember this blog which highlighted the achievements of our lovely Advocate Jessica Wales, who managed to walk a fith of the Adidas Challenge 5k to raise money for LLTGL and for Kings College Hospital. We were all so proud of her, and she was optimistic and hopeful that she would be able to do the entire course this year, with her new lungs.

Sadly, our lovely Jess passed away in January this year following severe complications which her body was not strong enough to cope with, having waited and fought for over 4 years.
This September, a group of Jess' friends, along with her wonderful mum Jackie, took on the Adidas Challenge in Jess' memory. The team were dressed in bright pink, and it was an emotional day for all involved, and there were tears and hugs all round across the finish line; tears of pride for the achievement, and tears of sadness at the fact Jess should have been there.

Jess' family and friends aim to continue Jess' work for LLTGL in her memory. It is a testament to Jess' incredible hard work, determination, and passionate spirit that she continues to save lives, even after she has gone.

They have raised over £800 through combined Justgiving pages and offline donations so far but you can still sponsor Team Jess at
Jessica Wales: Gone but never forgotten, and missed every day.

Monday, 6 September 2010

I Hope You Know

The band The Floe are loyal supporters of us here at Live Life Then Give Life so it’s about time we gave them a huuuuge shout out!

They are a fantastic quartet (soon to be duet) who are based in Essex, but just as the band were due to start recording the album Sarah’s (who is the lead singer of the Floe) long-term boyfriend was taken seriously ill. Needing a kidney transplant to save his life, Sarah selflessly donated one of her own kidneys to Paul in November 2008. The operation was a complete success.

This life changing experience gave the whole band an incredible opportunity to reflect and re-focus, and they have emerged stronger, more appreciative and more determined than ever to make music which matters on every level.
In November 2009, almost a year to the day since Sarah & Paul’s operations, Sarah launched a personal campaign aiming to get as many people as possible to sign up to the NHS Organ Donor Register. Sarah's campaign, called 'I Hope You Know' was backed by the release of The Floe’s debut single, also called ‘I Hope You Know’, with all profits donated to us here at Live Life Then Give Life!

The launch of I Hope You Know gained substantial national coverage on ITV News, Channel 4 News, Channel 5 News and The Mail on Sunday, amongst many others. The song was also recently played on Radio 2 by legendary Bob Harris! To read more about the campaign and to download the single please visit

The campaign has so far raised £1900 for us! The Floe are amazingly talented, Trustee Mandy and Advocate Lisa met the band at the recent event T’s in the park as they preformed live. Keep an eye out for them as we have a feeling they are going to get bigger and better! Check out their website for more info on upcoming gigs:

Thanks guys for your ongoing support, you rock!

Sunday, 1 August 2010

Marvellous Matt

There has been a huge break in me updating you all about the tremendous trustees so my sincere apologies but we had lots to shout about in the mean time such as, the new t-shirt designs (coming soon, just waiting for stock!) important business on our stance as presumed consent and our inspirational life stories during National Transplant Week. I just want to take this opportunity to thank our supporters, without whom we wouldn’t be able to continue the work that we do.

So up next is the marvellous Matt Coyne, he has the fortune or misfortune (whichever way you look at it) to be the only chap working alongside us ladies! Born across the pond in 1981, Matt moved to England in the summer of 1994. Always filled with a passion for water sports and other such activities, Matt thinks nothing of throwing himself off heading out in 30knots of wind kitesurfing or travelling the globe for a bit of surfing (just don’t get him to do any sort of bungee jump / skydive!) and is always up for a new challenge!

He moved to Brighton 8 years ago, where he met his now-wife, Rebecca and her best friend Robyn Tainty. This is where Matt first learned of Cystic Fibrosis, what it really means for people who have to deal a chronic condition, and the severe lack of awareness regarding organ donation.

Robyn worked hard in her education, picking up a CF Academic Achievers award at the 2006 Breathing Life Awards. In July 2007, she was the face of National Transplant Week, and was featured in the Sun for LLTGL, helping raise awareness of the plight of those waiting for a transplant. Robyn passed away in September 2007 after two years of waiting for a double lung transplant at just 23 years old. She was awarded a posthumous Masters degree from the University of Sussex in January 2008, having worked hard towards it until the day she died.

When you’re confronted by something affecting someone you care about, it causes you to think of what you can do to help make a difference. This is where Matt first established contact with the LLTGL team, supporting us at events he’s organised, through other various forms of promotion and by helping out at the Laughter for Life gig a few years ago.

Matt’s always had a penchant for pushing himself and sinking his teeth into any project he embarks on. Setting up his own marketing, sponsorship and sales company in 2005, he’s organised various events (including RobFest 2008/09/10 in memory of Robyn), launched magazines and worked on marketing campaigns for international exhibition organisers as well as being a coach at the Horsham Junior Baseball Club.
More recently he played a huge part in the success of the Save Jess campaign and the Save-Jesstival concert, getting to meet Natalie Imbruglia & organising everything from raffle prizes, to the venue to the printing of the tickets – even if he was suffering from tonsillitis at the time!

Matt is always on the lookout for fundraising ideas, and his latest must be one of his craziest ones to date. Along with his lovely wife and two of their friends, Matt will be undertaking the Lyke Wake Walk. They are doing it for one of our Ambassadors Victoria Tremlett and have named it Trekking for Tor! A walk you may say... however this is not a normal walk; it is anything but! The Lyke Wake Walk is 40miles long and they must complete it in less than 24 hours! All the money raised will go to us – Live Life Then Give Life! Please dig deep and show your support to Matt, the team and Tor.

If you have an idea for a fundraising opportunity, Matt is the person to speak to, just email fundraising [at]

I am so pleased to work alongside Matt as a trustee and I look forward to being part of some of his mad fundraising ideas in the future. You rock Mr!
Love, Hol

Thursday, 22 July 2010

Ts in the Park raises £££ for LLTGL!

On Saturday 17th July, a music festival entitled T's in the Park was held in Saffron Walden. The turnout was excellent, and a variety of artists performed including Susanna Cork, (who performed at Save Jess-tival) and The Floe (who have donated the proceeds from their single "I hope you know" to LLTGL). Raffle tickets were being sold in aid of LLTGL with some marvelous prizes donated by various companies, and the crowds were able to soak up the music and atmosphere in the summer sun.

Lisa and Mandy, flying the LLTGL Flag!

LLTGL Advocate Lisa attended along with her boyfriend Simon, as did our Treasurer Mandy and volunteer Sarah. Lisa and Mandy were asked to go up onto the stage and say a few words, and the organisers did everything they could to remind people what the event was in aid of and how to sign the Organ Donor Register.

Lisa, Susanna Cork, Ben Cork and Mandy.

Ts in the park raised a staggering £3500 and we are hugely grateful to everyone involved in the event. Our special thanks goes to the Turner family for making us their chosen charity; we really do appreciate your support.

Sunday, 11 July 2010

George's Story

We end National Transplant Week, with the truly inspirational story of 10 year old George Higginson, written in her own words by his Mother, Sarah Higginson.

"I was working my last shift before going to France for our family holiday when one of my colleagues said my husband was on the phone. He was telling me my eldest son George, aged 10, had been knocked off his bike and was being airlifted to the hospital where I work as a nursing sister. I tried to tell myself that perhaps they'd sent the helicopter because I live in a small village, because it was for a child or because someone had exaggerated the facts on the phone when they'd dialled 999. The gravity of the situation dawned on me when I arrived in resus in A&E to hear the doctor calculating the charge to set the defibrillator at and what dose anaesthetic drugs to give.

After a few minutes, he still hadn't arrived so I rang my husband. There'd been complications and they were taking George to Royal Preston Hospital. George had had complications and they'd had to intubate him and stabilise him at the scene before transferring him. I was sat in Preston's A&E resus and they wheeled George in on a spinal board. I just sat there, a few metres away from him, not daring to go near him or listen to what they were saying because it would just confirm what I already knew- that my first born son was no longer really here.

They scanned George's head - the consultant relayed the results to us - I can't really remember what he said, but I think George had 4 separate injuries, any one of which I knew he could die from. Until I told my husband this, he never realised just how serious George's situation was.

George went to theatre so that they could try and monitor the pressure inside his head; they had to remove part of his skull to try and remove the pressure inside his head - we'd have consented to anything just to try and save him. I was 19 weeks pregnant at the time, nauseous and exhausted - I kept falling asleep, then waking and having to relive the nightmare again and again.

When stable enough, George was transferred to Manchester Children's Hospital ICU - we followed behind in a police car, driven by our wonderful family liaison officer. He must have no sooner got into bed after spending several hours at Preston with us, that he got called out again to drive us to Manchester, where he stayed for most of the following day to support us.

Every time someone updated us, the news was worse, until that final, inevitable conversation to tell us that George was brain dead. From hearing his scan results at Preston, my husband and I had talked about donating George's organs. I was worried my husband would refuse - he always said he hated the thought of post mortems, so I thought he may feel the same about organ donation. He'd remembered a conversation George and I had had whilst watching a medical programme on TV where they were performing an organ transplant - George couldn't understand why people wouldn't donate their organs.

Thankfully, my husband didn't refuse, and something wonderful was able to come out of this awful tragedy. We met 2 wonderful transplant co-ordinators - Lee & Lisa- who talked us through the process; I never felt rushed or forced to do anything I didn't want. They promised me they'd take good care of George during his organ retrieval and afterwards. My brother in law went to 'Gap' in Manchester to get George some new clothes to be dressed in afterwards - I didn't want him laying in the hospital mortuary in a shroud or a pair of hospital PJ's - he'd always been such a trendy boy !

The hardest things were telling George's brothers Henry, who was 8 at the time, & Max, then aged 3 that their big brother was going to die. It was the only time I've seen Henry cry about George's accident - I just wished I could have done something to make it easier for him and protect him from this trauma. And saying goodbye to George. He was moved to a side room. My husband, myself and George's brothers went into him. I remember holding and stroking his hand and there being no response at all - just like someone who's had a dense stroke.

Walking out into the Manchester sunshine to be driven home, knowing I'd never see or hear my son again in this lifetime, there aren't words to describe it. Only 10 days prior to his accident we'd all been in London celebrating his 10th birthday - we'd had lunch at Gordon Ramsay's Boxwood Cafe restaurant (George's choice!) and he'd spent his birthday money in the Apple shop on Regent Street on an IPod Touch; the photo of him is from the Ferrari shop next door on his birthday.

The morning after, my husband took a call from the transplant co-ordinator. He came upstairs sobbing and all I could think was that they hadn't been able to use any of George's organs - all this pain and suffering for nothing. Quite the contrary - the transplant co-ordinator said George's organs were beautiful and gave us brief details of who had received what. I cried what I can only describe as tears of joy - I was so proud of what my son had helped make possible. I thought of the recipients getting their calls and what must've been going through their and their loved ones' minds.

People say we were brave to make the decision to donate George's organs - we weren't brave at all; we were grateful we were in a position where we could bring some joy out of our situation. There isn't a day goes by when I don't think of my beautiful, clever, kind loving son, but also of the people he's helped - they bring me so much comfort and pride. My letters from the transplant co-ordinators and from one of the recipients and their family are very treasured - I get them out from time to time to read. If anyone else ever finds themselves in a similar situation to us, I'd urge them to donate their loved one's organs - it's decision I'm sure will bring them a great deal of comfort and one that they'll never regret."

Please, think about it, Talk about it, Do something about it.

Sign the Organ Donor Register
- in memory of George and all the other wonderful Donor Families that have given the gift of life.

Saturday, 10 July 2010

Introducing Kirsty!

What a fantastic time, during National Transplant Week to introduce the newest addition to our Advocate Team, Kirsty Geddes.

Kirsty was diagnosed with Cystic Fibrosis at nine months old. It wasn’t until Kirsty was 13 that her condition started to deteriorate. She began having hospital admissions for Intravenous antibiotics which would mean a two week stay. At first this was two to three times a year but as time progressed it became more often and eventually by the age of 16 she was able to administer her IV’s from home.

Kirsty went to university at 18 but ended up becoming extremely ill and at 19 had to drop out. At this time, her Doctor and CF team warned her that if she didn’t stop work and pay attention to her health, she wouldn’t be here in a year’s time. This was a life changing moment and Kirsty gave up work and started focusing on her health. Unfortunately the damage had been done and her lung function had dropped to 35% - just a third of a normal lung capacity of someone else her age.

In February 2008, Kirsty suffered a pneumothorax (collapsed lung). Kirsty had a further two collapses and it was around this point that transplant was becoming a reality. Following the pneumothoraces, her lung function was now sitting at just 25% and Kirsty was told that if her lungs continued to collapse there would be very little the doctors could do for her; her only hope was to get onto the transplant list.

Kirsty’s transplant assessment was done at Freeman’s Hospital, Newcastle, and took place in February 2009. After three days of rigorous tests Kirsty was told that she was an appropriate candidate for transplant, and put on the active waiting list.

Life waiting for transplant wasn’t easy but Kirsty took every day as a gift and pushed herself to live, studying hairdressing in Coatbridge College where she was awarded an A. During her attendance at College Kirsty required 24hr oxygen, a non invasive ventilator, four nebulisers a day, three sessions of physio and around 60 pills a day.

Kirsty waited for eight months but then in November 2009, she got the call from the Transplant Co-ordinator at Freeman’s Hospital to let her know that they had some suitable lungs. Kirsty’s operation took seven hours and she woke up some ten hours later. Exactly three weeks after her transplant, Kirsty was strong enough to go home and says she hasn’t looked back since.

Kirsty is a vibrant and headstrong lady, with a love of dancing and glamour, and a fiery attitude towards life and its obstacles. Kirsty simply says that she always wanted to be busy and not let CF get in the way of her life.

Welcome aboard Kirsty - we look forward to working with her and know she will be a great asset to the team.

You could be someones hero, sign up to the Organ Donor Register now.

Friday, 9 July 2010

Molly's Story

The next story in our special blogs for Transplant Week, is 18 year old Molly Smith's story. Here she tells us first hand, her journey to transplant and beyond (written March 2008).

Molly received a multi-organ transplant (small bowel, liver and pancreas) at the age of 16.

"When I was just 6 months old I was suddenly taken ill and it was discovered that the majority of my small intestines had telescoped in on themselves and died due to restricted blood supply. After surgery to remove the affected bowel I was only left with 30cm of small intestine, and as a result I was put onto intravenous feeding, called TPN (total parental nutrition), administered through a central line leading directly into my heart. The TPN I received contained all the nutrients I needed, so I didn’t eat anything at all by mouth. As I grew up I easily adapted to living like this as it was all I had ever known. And as my TPN only had to run overnight I could attend school during the day, and in most other respects led a ‘normal life’. My health was good, and I only occasionally had to miss school for hospital appointments.

However, when I was 14 my family and friends began to notice I was jaundiced, and over the following months this became more obvious. I also became very lethargic and regularly suffered from severe nosebleeds. After tests at different hospitals it was discovered that I was suffering from TPN related liver disease. TPN often causes liver disease in babies and toddlers, but it was very unusual for it to cause problems in someone who had been on TPN as long as I had. The only chance I had was a multi-organ transplant (small bowel, liver and pancreas). After a two week transplant assessment at Birmingham Children’s Hospital I was put on the transplant list, just before my 16th birthday.

Back at home waiting for a transplant, my health deteriorated further. After 7 and a half weeks waiting I attended a clinic where I was told that there was a national shortage of donors, so I could be in for a long wait. Just a couple of days later the call I had been waiting for came. My dad drove us to the hospital that night and then at 8am on Sunday 19th November I went into theatre for my transplant. I was in theatre for 12 hours, in intensive care for 5 days, and in hospital for 12 weeks. The 12 weeks I spent in hospital weren’t straightforward as different complications meant I had to return to theatre more than 10 times. But eventually in February 2007 I returned home.

Since I returned home my health has continued to improve. In the 2 years since my transplant I’ve experienced no rejection. I returned to school full-time 9 months after my transplant and most of my new friends have no idea I’ve been ill. My medications have reduced from 14 to just 5. After my transplant my feed was changed from TPN (which went straight into my heart) to enteral feed (which goes into my stomach and digestive system), as I now have enough small bowel to absorb nutrients. Since I came home from hospital I’ve learnt to eat and gradually built up my eating and decreased my enteral feeds, until my eating got to a ‘normal’ level and I could stop the enteral feeds completely.

I feel like my transplant has given me a future as I know without it I wouldn’t be here now. My transplant has enabled me to do so much and last month I went on a school trip to Japan, which would never have been possible before. I’m eternally grateful to my donor and her family."