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Steve’s story

Steve's storyOn the afternoon of the 9th November 2012 I stood by the side of my beautiful daughter as her life support machine was finally turned off. Those huge hazel eyes I had spent 36 years loving suddenly opened. I was shocked and thought momentarily that Sarah was shouting at me through those eyes “what are you doing Dad?”

I needed to be alone and went outside where a tree felt the full anger, anguish and utter sadness that was seething through me. It wasn’t the tree’s fault but after the heinous roller-coaster our family had endured since Sarah was diagnosed with a chronic lung condition Idiopathic Pulmonary Fibrosis 2 years previously, the tree was just in the wrong place at the wrong time.

It doesn’t get much worse than that moment. And the anger is born partly from knowing that Sarah would still be alive today, her 3 children would still have a mother, her husband a wife and me a daughter, IF ONLY everyone could see how vital it is to become an organ donor.

A week later and our story would have ended so differently. A week later life saving lungs became available… That was simply a week too late.

Sarah had carried her illness with incredible bravery and stoicism, even insisting on taking part in a 5 mile walk which she took days to recover from. And her final wish. Well her final wish was to lead from the front and have her organs donated as we all should.

The night I saw Sarah’s huge Hazel eyes open for the last time her organs saved 3 lives. Maybe she was really shouting… “you know what to do Dad.”


iLIVEiGIVE are so proud of Steve Gazzard and so proud that he is part of our quest to get everyone signed on the organ donor register. He has worked tirelessly in Exmouth for 2 years to get his community to sign onto the organ donor register. In large part through his commitment Exmouth now has a bigger percentage of their population on the register than any other town in the country.

Whilst iLIVEiGIVE are proud of him, we know a lady in Heaven whose huge hazel eyes will doubtless be gushing with the most pride today.

Kathryn’s story

Kathryn's storyI’m Kathryn, married to Rob with two daughters, Sarah and Rose. My problems started years ago and were mainly symptoms of fainting, but after extensive tests, doctors were unable to find anything wrong with me.

Eventually, when I was 49 and my symptoms had got worse, I was diagnosed with Idiopathic Pulmonary Arterial Hypertension (PH), which is an incurable and progressive rare disease that damages the lungs and the right side of the heart. My disease was classified as severe on diagnosis and my heart was failing.

I was quickly placed on a heavy regime of medication including a twenty-four seven, intravenous drug to help my heart and lungs. My condition was deteriorating when I was referred for transplant at Papworth Hospital, where I was already being treated. I needed a heart and double lung transplant and I was accepted on the transplant list in September 2011.

It was all a massive shock and I made adjustments to my lifestyle. I gave up my career as a teacher and paced myself with what little I could manage. I lost my independence, but was happy to use a wheelchair so I could get out and enjoy precious time with my family.

Eventually after a two years wait, I got my transplant call and in September 2013 I received my precious gift of a new heart and lungs. Life is now so different, I am healthy and well again and the wheelchair has gone. I can walk for miles, exercise and do all those simple things once more like driving and shopping. I’ve got my independence back.

I will always be grateful to my donor and their family for giving me the gift of a new life and for giving me this second chance to make the most of life. I know first hand how precious and unpredictable life can be.

Tracy’s story

I have always been a very active person with oodles of energy. However, during 2009/2010 things began to change. I was always tired and just didn’t feel right. This lead me to visit the doctor on several occasions to be told each time that I had a virus. After a while I decided it must just be me getting older!!

During August 2010 I was vomiting regularly and my family asked me to visit the GP again. This time I went with the resolve that they will perform some tests. The doctor advised again that he thought I had a virus but did some blood tests just in case.

That evening, after a call from the out of hours doctors, I was admitted to the medical admissions unit with kidney failure and then into the high dependency unit. I had a blood pressure of 250/150 and a kidney function of 6%

The next few weeks were a period of immense change and an emotional roller coaster. The thing which effected me the most was the selfless and most generous offers I had from friends and family to be tested to see if they would be a match for a living donor transplant.

My mum was eventually tested and found to be the best match. After numerous tests to ensure that donating a kidney to me would not be detrimental to her health, she had the go ahead. From the moment of diagnoses to now, the only thing that has brought a tear to my eye is my mum’s sacrifice, she is truly inspirational.

During this time my kidney function fell to 4% and I commenced peritoneal dialysis to ensure I was well enough for the transplant when the time came.

I was fortunate enough to get the date for the transplant very quickly and on the 11th January 2011 mum and I were at Derriford Hospital for the operation. The operation was a great success. Mum was discharged after 4 days and I was after 10 days.

Now my wonderful mum is as well as ever suffering from no implications from donating a kidney to me and my life is wonderful. I am back to the person I was five years ago with energy to spare. Mum has genuinely given me the gift of life, as I have my original sparkle back and I am living life to the full once again.

I have entered the transplant games for the first time this year and I’m swimming before work at least three times a week in preparation. We are all going to Bolton in August to represent Derriford. Each person in the team has a different story to tell of their journey and each of us are passionate about organ donation and the difference it can make to people lives.

If you are not signed up to the organ register, please think about the life your gift would be improving, but also, please ensure you discuss your wishes with your loved ones.

If you would like to read more about my journey, please take a look at my blog: http://tracyanncarroll.blogspot.co.uk

Tracy's Story

Picture from Helston Flora Day this year shows clearly what a picture of health I am :-)

Ava’s story

Ava's Story
Ava was born on the 5th August, 2008 with the rare form of liver disease, biliary atresia, as well as multiple congenital heart defects.

She underwent her first surgery at just 4 days old in Bristol Children’s Hospital to open a valve in her heart and from there she was transferred to Birmingham Children’s Hospital where she was to be diagnosed with biliary atresia, the narrowing of the bile ducts in the liver, which led to the poisoning of the organ. At 4 weeks she went to theatre to have the Kasai procedure. Unfortunately, for Ava, this wasn’t a success and she quickly entered end stage liver failure. She was too poorly to be at home. She was luminous green with jaundiced and suffered regular bouts of cholangitis. Her tummy then became so swollen with fluid that she could no longer sit, or move. She had regular bleeds due to portal hypertension and was on 24 hour infusions of drugs to control the bleeding. She was placed on the Transplant list at 5 months old weighing in at just 12lb. Every day we watched her deteriorate, she was literally slipping away before our eyes and all we could do was hope and pray that somewhere, someone would say ‘yes’ and be her hero.

On the 10th May 2009 we got the call. Ava was incredibly poorly, but she fought through the lengthy 13 hour surgery. Initially, the transplant was thought to be a success, but unfortunately, the blood supply to her new liver had been compromised. The organ simply couldn’t function. We are blessed to know that the wonderful donor who saved Ava went on to save 3 other lives, and the other half of the liver that Ava had, saved another too. We were beyond devastated, we knew that we had been lucky to have found the first hero, the chances of finding another were near on impossible. Incredibly, despite being in total organ failure, on full life support and suffering two cardiac arrests, as well as being told that we would soon have to say goodbye, our girl clung to life for 5 days… in the small hours of the 15th May, when the decision to turn off her life support was being made, another hero came forward. We knew it was a long shot, but thankfully the incredible intensive care team were willing to believe in Ava, just as much as we did!

By some miracle, the surgery was a success! Another angel donor and their family had made the selfless decision to save our baby’s life.

It was a long couple of months in ITU, with numerous infections, additional surgeries (including an emergency splenectomy in her cubicle) and breathing issues. She was left ‘open’ for several weeks to ensure the same catastrophic issues that she’s suffered before did not reoccur.

She returned to the ward on the 28th July, and we were allowed home on the 3rd August, 2 days before her 1st birthday….it has been an incredibly long, eventful year!

It will be a lifetime of care and medication for Ava, she still has issues with portal hypertension, her cardiac care, respiratory issues and super low immunity due to her anti rejection medication and the lack of a spleen but all in all, we are incredibly lucky to have been blessed with the most amazing life! She is happy, beautiful and full of the joy of life! She loves school, singing, dancing, going to rainbows, a being a real girly girl. She even loves seeing her wonderful care teams in the hospital, and has made some amazing ‘special tummy’ friends.

There are no words to express our gratitude to our incredible donor families, the amazing teams that we are blessed with, and the most wonderful friends that we have met along the way.

Spreading the Word…

We can’t believe another month has gone by already… but what a month it’s been!

With the Shooting Fish gig and the Plymouth Raiders game both in the same week, it’s a good job we like being busy! Both nights were a great success and the iLIVEiGIVE message was spread far and wide. We got the chance to meet lots of new people, which is one of the best parts of our job! It’s so worthwhile as a team when we’re able to engage with people that may never have considered organ donation before and are as eager to find out more about the subject as we are to tell them about it! We’re not here to pressure people into signing up to the register but to better inform people in order that they make the best decision for them.

The gig at Mama Stones was fantastic – Suzy Bennett was (of course) hilarious and had people howling with laughter that was so loud you could hear it from the street outside! Her funny anecdotes (mostly at the expense of her poor mum!) warmed up the crowd nicely and prepared them to welcome the band on stage. The iLIVEiGIVE team would like to say a huge thank you to Suzy for coming all the way from London to compère the evening.

Which brings us on to the band themselves, with excellent covers of songs by groups like the Kaiser Chiefs and Ash, the guys in Shooting Fish got the crowd buzzing and ready for the weekend (even though it was only Thursday!). Thank you so much to the band and also to Mama Stones for hosting the night and helping us spread the message about the importance of organ donation.

The Raiders game was another great night with the focus very much on celebrating life post-transplant as one of the Raiders’ table officials, Joe Peard, received a heart transplant this Summer. Joe, who also received the award for ‘England Basketball Table Official Of the Year’ that evening, joined the team in supporting iLIVEiGIVE as a platform through which organ donation has been brought to attention in the wider public sphere. Although we started as a campaign in the South West, we have be able to reach many people throughout the country and along with many other organisations are helping give the subject of organ donation more and more prominence.

Plymouth Raiders

The team looked amazing in their exclusive iLIVEiGIVE kits and we would like to wish them continued success after their amazing win on the night! Thank you to the Plymouth Raiders Chief Executive, Dave Briggs, for all his hard work in making the night happen.

All systems go!

Shooting Fish posterWith tickets now on sale for the Shooting Fish gig on 28th November, it’s all systems go in terms of getting the word out there! The team are so excited about the night and can’t wait to see lots of people there – it’s not very often we get to hold events and this is a great opportunity to raise awareness and have lots of fun in the process! It would be lovely to meet some of you in person, so if you live in, or around Exeter, come on down! Tickets are £4 and available via www.fatsoma.com/events/97240/ – it’s going to be a great night and all in the aid of a good cause so why not start the weekend a little bit early?

Also happening at the end of November is the Plymouth Raiders basketball match in aid of iLIVEiGIVE. The Raiders will be wearing exclusive iLIVEiGIVE tops to warm up in before the match and we’re really thrilled and thankful that they are helping us spread the word. There will be over 1000 people at the match and the campaign is sure to create somewhat of a buzz as we spread the iLIVE iGIVE word even further. The game will take place at Plymouth Pavilions and tickets are available here: www.plymouthpavilions.com/prod-productions_details.asp?pid=815. There will also be an iLIVEiGIVE stand at the game, so why not pop by and say hello – we’re a friendly bunch!

We’d like to say a big thank you to the guys in Shooting Fish for agreeing to play in aid of iLIVEiGIVE and also to Dave Briggs who has been so proactive in organising the iLIVEiGIVE/Plymouth Raiders collaboration. It’s so great working with people who are as passionate about spreading the word as we are!

We’ve got lots more exciting things in the pipeline as we explore new ways of spreading the iLIVEiGIVE word and continue to raise awareness about the importance of organ donation – keep and eye on our Facebook/Twitter for more information.

Thank you…

The iLIVEiGIVE team is dedicated to raising awareness and encouraging people to sign up to the organ donor register, but more than this we hope that we bring people together who all share this same passion. We want to get people talking, not only to loved ones, family and friends but also to other people who are striving towards these same goals – we are so lucky that we have such a strong network of people so willing to help us do this.

We have been overwhelmed by people’s support ever since the campaign started, and more so than ever just recently; we are so thankful to everyone that supports us – you never cease to amaze us with the efforts you go to, not only when spreading the iLIVEiGIVE message but also when sharing the importance of organ donation with others. The team have all been really touched by the messages we’ve received lately (some of which even made us a bit teary!) and we’d like to say thank you to everyone for your kind words. Without you all, we wouldn’t keep reaching new heights in our quest to raise awareness and, let’s face it, we wouldn’t have quite as much fun!

The iLIVEiGIVE team have been as busy as ever over the last month, between putting on various exhibitions and presentations we have also had quite a few interesting discussions with other organisations about the possibility of collaborating on potential projects – iLIVEiGIVE are taking over, watch out world! Maree presented at the NHSBT Organ Donation Congress at The University of Warwick and Jo, Amy and Milly showed off everything we do here at iLIVEiGIVE for the Annual Member’s Meeting at Torbay Hospital – the response to both has been extremely positive and it’s great to have the chance to speak to a wider audience about organ donation, particularly those that may not have ever thought about it before!

Becky Langley, Sharon Pike, Nicky Eastley, Zoe Woodall, Carol Glover, Julie Al-Mashoor, Laura walmsley, Dawn Miller and Jo Mcilhatton

We’ve also received an influx of great t-shirt photos recently, with people travelling to far and distant lands and taking the iLIVEiGIVE message with them. In particular we would like to say a huge thank you to the following ladies: Becky Langley, Sharon Pike, Nicky Eastley, Zoe Woodall, Carol Glover, Julie Al-Mashoor, Laura Walmsley, Dawn Miller and Jo Mcilhatton who have done fantastic work spreading the message whilst on their annual girls trip to Butlins. The group have been raising awareness in memory of their friend Sarah Wright who sadly lost her fight with lung disease whilst waiting for a transplant. Sarah’s organs were donated and saved the lives of three people: what a legacy to leave, and one that her friends and family are doing an amazing job of honouring. People were so interested in the group whilst they were wearing their t-shirts that they had people sign up to the organ donor register there and then by scanning the backs of the shirts – this is amazing and really shows that by working together we are all making a real difference! The iLIVEiGIVE team were thrilled to hear how much of an impact the girls made and can’t wait to hear about their next trip!

Looking forward, the team are gearing up for the Shooting Fish gig at Mama Stones on 28th November, with tickets due to go on sale soon. The evening looks set to be a great one with award-winning comedienne Suzy Bennett compering the evening. As well as this, we also have our collaboration with the Plymouth raiders basketball team to look forward to on November 30th! Contact us for more information and keep an eye on our Facebook page for details about tickets.