Friday, 29 May 2009

An incredible day filming in Leeds.

On Thursday 28th May, Oli and Emily travelled up to Leeds and Dewsbury to visit some rather fab transplant families.

First stop was 6 year old Bethany and her just-as-gorgeous little sister Eloise. Bethany had a blood test that morning and thanks to the lovely folk at her hospital, we were allowed to follow the family to clinic and film her. Bethany was an absolute star and extremely brave, and afterwards we had a chat with Eloise who is just 4 years old and explained how Bethany had had a "poorly liver" and needed a new one. We had a lovely morning with the whole family.

After a quick lunch, the filming duo dashed off to their next stop; 14 month old Gabrysia's house. Gabrysia is on the urgent list for a heart transplant and her family endured a nerve-shattering false alarm earlier in the week. Despite the fragility of their family life at the moment, Oli and Emily were inspired by how positive they were. Both Angela, Gabrysia's mum, and her two siblings Thomas and Ania spoke beautifully about how precious every single second is with Gabrysia.

Image courtesy of

All of us at LLTGL are hugely grateful to both families for allowing us to capture on film what life on the transplant road is like, and we are desperately hoping to wake up one morning very very soon to be greeted with the news that Gabrysia has received her life-saving heart transplant.

Wednesday, 27 May 2009

Latest news from NHSBT shows promise

The latest stats update from NHSBT brings with it some good news.

Over the last 12 months there has been an 8% increase in the number of transplants carried out in the UK. Figures also show:

  • An 11% increase in the number of deceased organ donors across the UK last year, rising from 809 in 2007-08 to 900 in 2008-09
  • And a 7% increase in the number of people joining the Organ Donor Register during 2008-09, rising from 15.14 million to 16.12 million by the end of March 2009

This is all rather fab news, topped with the also v important news that the gradual 5 year decline in attracting new blood donors has been halted.

This is a fantastic step in the right direction, however we still have big problems. Only 26% of the population is signed up to the Organ Donor Register; we remain one of the worst countries in Europe. The number of people in need of a transplant is growing higher than ever, and including people who are currently suspended from the active list is now topping an eye-popping 10,000.

But to know we are moving in the right direction is a positive and motivating thing indeed, and just reminds all of us at LLTGL how important raising awareness is. Keep on spreading the word folks; together we can make a difference.

Friday, 22 May 2009

London-Paris Bike Ride

Richard is cycling from London to Paris, starting on 9th September 2009, to raise funds for us and to increase awareness of organ donation!! Richard tells us that he signed up on a bit of a whim through one of our fundraising parter sites, Do It for Charity where you can undertake loads of adventures for us such as sky-diving, trekking and bike challenges.

We are always amazed at the transformation that transplants can bring and Richard is no exception, as thanks to a generous gift of a kidney and a pancreas from a stranger he went from the exhaustion of a dialysis regime to being able to ride 300 miles to Paris!

Richard says: "My life has been transformed by this and my whole family have been able to witness this wonderful chance I have been given...If it hadn't been for the actions of a young man signing onto the register my life would not be as it is now"

The daunting-looking itinery is as follows:-

Day 1: London - Dover - Calais
Depart from Croydon early in the morning and head SE via Tonbridge and through Kent to Dover to catch the ferry to Calais.

Day2:Calais - Arras.
The route travels through the French countryside starting off fairly flat but getting more undulating as the riders head South to Arras.

Day 3:Arras - Compiegne.
The riders travel through more quiet French villages and small towns towards the more forested region around Compiegne, which lies on the banks of the river Oise.

Day 4:Compiegne - Paris.
Travel SW through small villages and woodland to the outskirts of Paris. The traffic will get busier but we cycle through the Parisian streets, around the Arc de Triumph to the finish point directly beneath the Eiffel Tower.

Day 5:Paris - London.
A free day to explore Paris before taking the evening Eurostar back to London.

Richard has started his training and although he has been getting fitter he has a long way to go yet, so if you want to show him some support you can join the facebook group or send some pennies his way via his fundraising page!

Thursday, 21 May 2009

Spreading more Robyn's Rainbows magic!

Ahhhh...... this warms the cockles of our heart!

We were so sad to read a few months ago that the lovely Lucy Pearson, whose life was transformed by a heart transplant in 2006, was having some post-transplant complications and the stress was affecting the entire family. We were super-pleased therefore when we receieved a Robyn's Rainbows nomination for Lucy and her two siblings Alice and Ben and could send them something to put smiles back on their faces.

When mum Bev sent us these gorgeous pictures of the kids opening their balloons we were grinning from ear to ear!

Here is Alice and Ben opening their balloons:

Ben with his balloon:

Thankfully Lucy is now back on the road to recovery, and it so great to know that the balloons brought a little bit of sparkle and hope through her tough times.
If you'd like to nominate someone you think needs some TLC, please get in touch!

Wednesday, 20 May 2009

May is Coffee-Raise month at the DFN

We totally love the work of The Donor Family Network, an organization run by donor families that provides sterling support for other donor families as well as raising awareness of organ and tissue donation. They have a number of exciting events coming up including the National Gathering of Donor Families (4th July), the Precious Gift Service (5th July), attendance at the British Transplant Games in Coventry (30 July - 2 August) and the Fundraising Ball (5th September)

More importantly, to support the amazing amount of activities they do to help donor families(including telephone support, personal visits, and bereavement libraries and supporting the British Donor Family Quilt) and raise awareness of organ and tissue donation, the DFN have designated May as Coffee-Raise month.

All you have to do is hold a coffee morning during May. At the coffee morning you can do whatever you want to raise money - charge for the coffee, sell cakes, hold a raffle, sell our pin
badges. It’s also a great opportunity to talk about organ donation and encourage people to join the Organ Donor Register. It’s also a great way to get involved, meet people and have fun. All this while working to promote organ donation and raise much needed funds for the Donor Family Network. Posters, flyers, details and lots more available to download on the website or by contacting them

Tuesday, 19 May 2009

Team Ethan's big day

On Sunday 17th May, Ethan's family and friends gathered together in Manchester to raise lots of money for LLTGL in memory of a very special little boy.

Ethan Collins spent his whole life in hospital whilst awaiting a liver and small bowel transplant, but sadly passed away following post transplant complications on 1st May 2009, aged 16 months.

Despite this being a very sad time for the Collins family, they were determined that their fundraisers would go ahead in dedication to their little boy's determination. We were hugely humbled by their courage and Emily, Oli, Volunteer Lizzie Hutchinson and North West Advocate Holly Shaw represented LLTGL by attending the day.

Ethan's dad Stu and 6 others took part in the Bupa Great Run, with family and friends cheering them on. Despite the rain kicking in, all team members completed the race and have so far raised an impressive £2,656 in sponsorship.

That evening, hundreds of people gathered at Hardy Hall in Bolton for an evening of fundraising which included a raffle, an auction, and betting on virtual horse races. The spirit in the room was just incredible; it was one of warmth and support and positivity; everyone was just determined to raise lots of money and to support the family.

Early on in the evening, balloons were released with messages written to Ethan, and everyone assembled outside to let them go and watch them disappear up into the sky.

Team Ethan and their activities have so far raised almost £6,000. An incredible achievement at the best of times, but considering what a terribly sad time they have had recently, we are beyond humbled at their efforts.

All of us at LLTGL feel priviledged to be associated with little Ethan and his wonderful family. We were never lucky enough to meet Ethan, but having met so many of his loved ones this weekend, it is quite clear where his fighting spirit, happiness and sheer strength came from. An incredible weekend, and a huge inspiration.

There's still time to show your support:


Wednesday, 13 May 2009

More fab fundraising feats.

Big shout out and thank you to Emily King who ran the Great West Run for LLTGL on Sunday 3rd May. Emily was running in memory of her friend Rach and her cousin Millie.

She completed the 13.1 mile course in 2hrs 20, and says that this was slower than she wanted, however we know that Emily has overcome incredible difficulties to get this far and think she has done absolutely fantastically even think about doing this challenge! Well done to her fellow runners Chrissy and Sarah as well. So far Emily has raised an impressive £368! You can support Emily by sponsoring her here or joining her facebook group.

Not quite content with this fantastic feat, Emily has arranged a charity football tournament to boost her fundraising total even higher. The ladies medic football tournament will take place on Saturday 16th in Truro. We'll be thinking of you ladies and hoping for good weather!

Tuesday, 12 May 2009

Holly's on telly Thursday May 14!

AHHHHHH! We can't wait for Thursday, for that is when the documentary on Holly's battlefront campaign will be shown on the telly. We love this lady so much for all she does for raising the profile of organ donation, so you must see it!

We are incredibly over-excited that Holly is mentioned in the listings for the Radio Times!

Thursday 14 May
11:30am -
Channel 4

If u can't watch, SkyPlus it, VideoPlus it, catch it on YouTube, 4OD, whatever!

We can't thank Holly enough for being such an inspiration to us all at LLTGL as well as giving hope to the thousands of people still waiting for their gift of life.


Saturday, 9 May 2009

A tribute to Ethan Collins and family

We were totally devasted to hear that in the last few days little Ethan Collins, who many of you will be aware of through Facebook and our blog, passed away on the evening on Friday evening after suffering major post-transplant complications.

Ethan Collins, from Bury, Greater Manchester, was born a month premature with a condition where most of his intestine lay outside his body. During surgery, doctors were only able to save a portion of his bowel and with liver disease on top meant he was listed for a new liver and intestine.

Ethan's family have been incredible throughout the whole process, reached out to thousands through their appeal on Facebook in an attempt to find potential donors, doing everything they could to raise awareness about organ donation.

We were all really overjoyed when a donor was eventually found on 1st April 2009, and Ethan had his transplant operation. Sadly, Ethan remained quite poorly in the intensive care unit, and died only a month later.

In a moving tribute to their son, his parents write:

Our son fought since day 1 of his transplant right till the very end.
Ethan fell asleep with no wires attached, no machines beeping and no more pain.
Ethan was the bravest, strongest and most amazing child anyone could ever meet.
It has been an honour to be able to call Ethan our Son.

His family have been wonderful suppporters of ours over the last few months. We feel extremely priviledged that this incredible family have let us into their lives.

Rest in peace dear Ethan, and our fondest love and wishes to all of your family, from all of us here at Live Life then Give Life


Saturday, 2 May 2009

The 'Gifts of Life' photography project

We've written before about the wonderful Sarah Milne, photographer and Mum of William who received a life saving small bowel transplant last year and is now enjoying his gift to the full. In a new project designed to capture what receiving the "Gift of Life" means, Sarah will be photographing and exhibiting people either waiting for transplant or have received their life-changing gift.

Sarah is teaming up with the equally wonderful Holly Cocker, another photographer who
recieved her gift of a kidney from best friend Oli. Holly was diagnosed with ESRF (end stage renal failure) in 2003, and waited five long years on the transplant list for a new kidney before Oli came forward and in a pure act of selflessness donated his kidney to her in October 2008. In recognition of the way in which Oli's gift has changed her life Holly will also be doing a series of portraits of live donors and their recepients to capture the extraordinary relationship and strong bond that exists between them.

We are extremely proud to be a part of this exhibition, which will be used to raise awareness of organ donation. Both Holly and Sarah's photos will be exhibited at the Menier Chocolate Factory Gallery from the 14th - 19th December, with exciting plans for more exhibitions across the country.

Both Holly and Sarah
would love to hear from anyone who can help them with this project, especially
  • Volunteers who have had a transplant, or anyone who is waiting for a transplant, and are willing to be photographed
  • Suggestions and help in promoting the project far and wide
  • Volunteers to organize an exhibition in their area or can help out with the project in other ways (for example, help with printing, framing, PR)
  • Help with fundraising and sponsorship to cover costs
  • Any other suggestions you might have, for example venues that might be suitable to exhibit the photos.
Pop on over to the project website now for further information, galleries, the stories behind the photos or to get in touch with Sarah and Holly, and over to the blog for the latest as the project unfolds

We can't wait to see the results!