Three Special Thank-Yous

Cherry, just 3 months after her kidney transplant

Nelly

Two friends who helped each other through kidney disease and dialysis, now united as transplant recipients

Last week was a busy week for 'Gifts of Life' with two photo shoots, one a double shoot. Nelly has already been featured in this blog here

When I met her, Nelly told me about her friend Cherry and how they would like to be photographed together. At the time, Cherry had only received her transplant a few weeks ago. Nelly and Cherry met on the dialysis unit and became close friends. Cherry was born with the hereditory condition, PKD or polycystic kidney diease. Her father had the disease and also received a kidney transplant and her brother is currently in the early stages of disease. Cherry was very close to her father and he gave her strength to cope with the deterioration of her condition and going onto dialysis. Sadly, he died of a stroke two years ago and Cherry is sad he was not there to see her transplanted and to answer her questions about it. Cherry is a strong Christian and has always turned to God for help and guidance. This has been all the more important to her since she lost her Dad. She says her faith is what got her through losing him, her disease progression and her transplant.

Friends like Nelly have also been important. Nelly bought Cherry a bracelet after her transplant and a matching one for herself to represent their bond. As in some of the previous photo shoots, we were helped out with a highly appropriate piece of graffiti. I love the image of Nelly and Cherry holding hands in front of the 'yes yes' One for each of them to represent the donors and their families who said yes to them. Both girls talked of their donors and are incredibly thankful to them for the lives they now have. After a few more photos, to be seen in the exhibition and book, I left them with plans to spend the rest of the day looking around the Tate Modern. It was the first time they had been able to spend a day out together.

Richard Ready for the Off

Richard received a kidney and pancreas transpant two years ago. His life has also been transformed and he has been inspired by other transplantees and people waiting for their call to come. Many of these are people he has met on Facebook and the intoto forum He decided to express his thanks by taking on a challenge to raise money to help Live Life Then Give Life
develop their work in promoting organ donation. I photographed him the night before his cycle ride from London to Paris. The following four days would see Richard cycling up to 95 miles each day to complete his journey. He reached Paris yesterday and is now home tired but very proud of his achievements and thankful to the donor who made it possible for him. He has raised over £2000. A fantastic achievement!

This woman is awesome!

Louise - truely beautiful in every sense of the word

I know that I am constantly saying here that the person I met today is truley inspirational, awesome, amazing... All of these wonderful people I have photographed are that. Each of the stories I have told on this blog are of people who have been through what most never even contemplate and have come out shining like gold. Within these stories are a handful of people who are those people who touch you. You meet them and you know your life is never going to be the same again, that they have given you something special of themselves and that it will shape the rest of your life. Louise is one of these people.

Louise is an advocate for Life Live Then Give Life. You can read the beginning of her amazing (see I've said it again) story here As italic writing at the botton of the page says, Lou got her transplant. Like the other transplant recipients I have introduced you too, her story doesn't end there. Unlike some of the others though, her story has remained one of fight, tremendous courage and great uncertainty. Louise lives about 10 minutes from me. Her photo shoot should have been the easiest to arrange but it has been the hardest and, in the end, I grabbed her after lunch while I was photographing all the advocates for LLTGL at their away weekend yesterday. I was meant to be photographing her today in the woods at the top of Addington Hill (she was going to get a taxi there not climb). I could tell within a few minutes of meeting her that, after the advocate's weekend, that was going to be too much for her. We had tried about five times to arrange the shoot but, each time, Lou is just too tired.

Transplants are dangerous. They are life saving but they are dangerous. At assessment for transplant, you are given a huge list of potential complications. One of these is something called PTLD. This is a form of cancer caused by the common old glandular fever virus. In an immunosupressed person the virus can multiply locally in the body and cause a malignant tumour. Sadly, Lou is currently battling PTLD and undergoing chemotherapy. If that were not enough, she also has a form of heart failure caused by her underlying condition that led to her needing her lung transplant.

One of these things alone would be enough to make most of us give in and take a time out from life. Not Lou. She was there at the advocate weekend with her Mum's support and remains fully commited to raising awareness of transplants and organ donation. On September 6th, Louise is going to hug a tree for 2 hours to raise money for Live Life Then Give Life and CLIC Sargent. Why not sponsor her here. Louise truely is inspirational and it isn't just the things she is doing. She oozes optimism and positivity. I have spoken to her on the phone when she could hardly breathe at all and she still bubbled over with vibrancy. You can see it in her eyes as soon as you meet her and I hope the pictures show it. You come away from any contact with Louise thinking, if she can be so positive about the lot she has on her plate then I should be able to find so much to smile about. Her attitude to life is infectious. I can't wait to see her again and I know I will take something of her spirit away with me through the rest of my life's journey so thank-you Lou.

You can follow Louise's blog here. I strongly recommend it, especially on a day when you are feeling a bit sorry for yourself.

Three Beautiful Girls

Bethany, six months after her liver transplant

Bethany and her sister, Eloise, enjoying art and crafts at The National Railway Museum

Eloise in the spotlight

The last couple of days were supposed to bring a whistle stop tour of Manchester, after first stopping of at York to meet another family whose child has recently had a life saving liver transplant. It didn't all go completely to plan. The blog title should have been four beautiful girls but the fourth, someone waiting for a transplant, was unwell with an infection and, potentially a stomach bug. As William was travelling with me, it meant that shoot had to be postponed as infection, especially stomach bugs can be dangerous for him.

We still had a good couple of days and captured some great images. We started off at The National Railway Museum in York where we spent the day with Bethany and her family. Bethany had a liver transplant early this year. You can read about her life before transplant here The difference Bethany's transplant has made to her is clear to see as soon as you look at her pink, healthy face and watch her endlessly run and dance around with boundless energy. William adored her and Eloise. Eloise has been an important part of Bethany's transplant journey. The family were able to stay together in a flat near the hospital while Bethany was recovering. Siblings often get left out and marginalised when there is a sick child in he family. This was something I explored in the pictures I took of them. Overall, the pictures reflect two very happy and healthy little girls, full of love and energy. There are a lot of them too. I will have a hard job chosing which to use in the exhibition and book.

From York, William and I travelelled to Manchester, staying over night in a Travelodge, which was an interesting experience. William refused to sleep! I was somewhat tired when I met Holly the next morning.

Holly received a kidney transplant at the end of last year. Many people will know her face as she is a tireless campaigner for organ donation. She was featured on Channel 4's Battlefront programme and has been on TV and in the media a lot with her 'Gift of Life' campaign. Holly is also an advocate for Life Life Then Give Life and you can read more about her here

I had originally thought of capturing Holly doing her campaigning but many a photographer before me has done that for the numerous articles about her. Instead, we wondered around Manchester, enjoying some of the things that were impossible for Holly to do before her transplant. We were thrown out of 'Harvey Nics' where we tried to take some shots of Holly lusting over Jimmy Choos and sequened gowns. Apparently, Jimmy Choos may not want to be associated with this! We should have applied for a permit to find out. Another practical lesson learned. Holly was keen to be pictured with ice-cream, something she wasn't allowed when on dialysis. In true British tradition, the heavens opened as soon as we had bought some. Our plans for shots of Holly enjoying a summer ice-cream beside The Windmill were scuppered and we had to head for shelter. Thanks to Selfridges and Marks for the under cover walkway we sheltered in and the interesting back drop we took advantage of. No-one stopped us in there and we got our shots.

Holly enjoying her ice-cream and remembering the days when it was strictly off the menu.

Jemma, Michelle and Thirty Amazing Children

It has been a while since I last posted on here. I went away on holiday to Mum and Dad's with the children a couple of days after the meeting Nicola and Megan. While I was there, I met Jemma and her Mum Michelle. Michelle and Mum got chatting one day and quickly became good friends, not least because they had something very big in common. Mum was Grandma to a little boy who we knew was likely to need a small bowel transplant at some time and Michelle was Mum to a grown up girl who was waiting for a kidney transplant.

Jemma was diagnosed with end stage renal failure six years ago, in 2003. Michelle donated a kidney to Jemma in 2004 but, sadly, the transplant failed within hours. After four years on the transplant waiting list, Jemma received a second transplant in August last year, just as William was going on the waiting list for his new bowel. This kidney was rejected after four months and Jemma is now back on dialysis and waiting for a third chance at a new life, free of the tubes and machines that keep her alive. Jemma does her own dialysis at home overnight, a system called APD or ambulatory peritaneal dialysis. She does this overnight, every single night of her life.

We shot Jemma and Michelle's photographs in Mum and Dad's lovely garden and conservatory. It was a dull summer evening and it began to rain hard during the shoot. This was something that became a very powerful feature on the image I will be using for the exhibiton, an image I really like and had to fight hard with myself not to show you now.

However, I can share some more photos of some amazing and inspirational children. We went straight from Mum and Dad's to The British Transplant Games in Coventry. William was competing with the Birmingham Children's Hospital Team and I had the privilege to photograph them throughout the weekend, as well as talking to the children about their transplants, the games and how both have influenced their lives. It was a fantastic and moving experience. The children are awesome and I was so proud to see them win the trophies for the best liver team and the best overall children's team for the 14th year in a row.

Do have a look at them. A few of them will be used in the Gifts of Life exhibition but I am not sure which ones yet. There are so many that I really like and all of them tell a story about transplants and how they save and transform lives. You can find them here.

Nicola - 20 years on!

Nicola had a heart and double lung transplant 20 years ago. Her ten year old daughter, Megan was the third ever to be born to a woman after such a transplant and Nicola was the first to give birth naturally.

Nicola and Megan are enjoying every moment they have together

On Saturday, I travelled to Eastbourne, on the Sussex Coast, to meet Nicola and Megan. I bought along my three children too for a day at the seaside. We all had a lovely time together, once again, it was more than a photo shoot, it was day with new friends. I know we will see them again too. Ellie and Megan are the same age and had a fantastic time together. We wondered through the arcades on the pier, consumed all the seaside treats and then worked the calories off walking along the beach where Ellie and Megan immediately jumped up to their knees in the sea. While the children were all playing, Nicola and I had the chance to relax and chat.

It is fantastic for me to hear Nicola's story. It gives me great hope to think of William still with us in 20 years time. Nicola has had a fantastic life and has achieved a great deal, not least her wonderful family. But her story is not all a happy one. Transplanted organs do not last forever and Nicola now has just 25% of her lung function remaining. Her struggle was clear to me. We had to leave the pier as the wind was literally taking her breath away and, after an hour or so on the beach, Nicola was tired and suggested we all went back to their home for a rest and a cup of tea. While we were there, she showed me her album of newspaper and magazine articles that have been written about her to help raise awareness of organ donation. She and Megan even held the front page when Megan was born. In addition to her campaigning, Nicola has set up a charity, look beyond the heart, to help support transplant recipients through the ups and downs of life after their operation and the medical treatment they need to stay alive.

Nicola's future is now dependent on the success of campaigns to raise organ donation awareness. She is realistic and knows that her lungs are likely to last only 5 years more at the most. Her only hope beyond that would be for a second lung transplant but she has been told it is very unlikely she will be offered that chance. There are simply not enough donors to enable people who have had a good and long life after a transplant to be given another organ to extend their life even further. It is a very difficult question in medical ethics. You only have so many organs to offer and who should have them - the young patient who has not yet had a chance at adult life and will die in the next two years without a transplant or the patient who has had a great 20 years after transplant, built a loving family around them and will leave behind a daughter? If there were enough donors, both could receive one.

The desperate shortage of organs for transplant was something that was very much on my mind as I travelled home. William had his transplant at 4 so, like so many other children who have received transplants, his chance at reaching adulthood could depend on there being sufficient donors to enable him to have a second transplant. I am hoping this will not be the case and that the advances in rejection prevention and treatment as well as detecting and treating infection and transplant related cancers will mean that his bowel lasts him a good lifetime but there are lots of uncertainties in a life after transplant. Living with these uncertainties is a lot better than life before transplant when things are a lot more certain. If you don't get the transplant you WILL die. With that in mind, I was absolutely delighted to switch my computer on when I arrived home and see the news that Jess had been called for transplant. Within half an hour, all hopes had been turned to disappointment and sadness for her when she updated Facebook with the news that it was a false alarm, her eigth call end this way!

The lack of donors is something that others who have been involved in this project are also experiencing at the moment. Oliver will always be very special to me as he was the first person I photographed for this. I am so glad I took those happy photos that morning as they are the last ones of him looking like that. That very afternoon, Ollie became very unwell and has not returned home from hospital since. His has been in and out of intensive care and operating theatres and his Mum has been told to start thinking about transferring him to a hospice. Ollie's time is very much running out. He is 7 years old! His Mum is amazing and very, very strong but it is heartbreaking for her and I so hope and pray a suitable donor can be found in the nick of time for him.

On a happier note, Gabrysia did receive her new heart just over a week ago and is doing very well and out of intensive care.

I really want this project to raise awareness and make a real difference in saving lives. Plans are coming together for the exhibition in London from December 14th - 19th and for the photo book. While working on these and seeing them through, I am also looking into 2010 when we hope to send these images aound the UK so as many people as possible can see the stories they tell. This is where I need your help. If you know of anywhere in your area where the exhibition could be shown then please do get in touch. The email address is on the main website. It doesn't have to be a traditional gallery, just anywhere where people go so it can be seen. It could be a library, a school, a community centre, hospital, shopping centre. Someone has offered to put it up in her pub. Please do have a think about that. I am doubling my efforts now to make this as successful as possible.

'Newsagent Ken'

One of the most exciting things about the 'Gifts of Life' project is the way that it snowballs and people know someone, who knows someone... and I get to meet all these fascinating and inspiring individuals and photograph them.

The lovely Helen (who I will be photographing at work in the City at a later date..) got talking one day to her newsagent and found that he is part of a family who donated their brother's organs after he died suddenly. Ken is affectionately known as 'Newsagent Ken' and I could see in the short space of time I watched him and work and photographed him exactly why. He knew everyone who came in by name and was always smiling.

'Newsagent Ken' was keen to be involved and be photographed because he knows only too well that there is a particular shortage of organ donors, as well as blood and bone marrow donors among the Asian population and this can lead to very long waiting times for people of Asian ethnicity. Ken and his family gave the greatest gift that anyone can ever give - life to others. It was an honour to hear his story and to photograph him.

Go Justine!!

If you have been following this blog from the beginning, or know the inspiration behind my work, you will know that I was hugely inspired by an installation of work by Tim Wainwright and John Wynne, a photographer and sound artist, who worked as artists in residence among the transplant patients at Harefiled Hospital for a year. You can see more about this work on their website here I came across their exhibition through a postcard with the image below on the front. I still have this card displayed above my desk. These legs belong to Justine. The legs above are also hers, three years later and after a double lung transplant saved her life. With Jusine's legs hanging on my wall, it was lovely to be able to meet the rest of her at last. She is an amazing wonder woman and a fantastic inspiration to all those out there waiting for transplants. Justine was so ill that she had 15 lung collapses and onse spent 4 weeks on life support and had to re-learn how to walk with a zima-frame. Now she is in serious training for her third British Transplant Games with high hopes of qualifying for the European and Worlds.

Above image taken from 'Transplant' http://http//www.thetransplantlog.com/

Justine had the rare lung condition lymphangioleiomomatosis - LAM for short. She was on oxygen 24 hours a day and was dependent on a wheelchair. You can read more about her on her blog here and can even watch a very moving video on You-tube here

Justine practising digging to pick up speed coming off the corners on the track

I passed all the building works for the 2012 Olympics in Stratford on my way to meet and photograph Justine in training at The Chelmsford Sports and Athletics Centre. Huge thanks are owed to them for letting me follow her around for a morning and snap away. Justine is every bit as commited to her training as those hoping to appear in the stadium being built down the road. She runs, long jumps, plays badminton, has gym sessions and works with a personal trainer. The transplant games are much more than a nice excuse to meet fellow transplantees, although that is an important element of them. There are athletes all over the country traing hard to win medals and opportunities to represent the UK at European and World level.

Justine working hard in the gym

I had a fantastic morning with Justine and, again, finished with a lovely lunch in a pub. I could really get used to this and have made yet another new friend who I hope to spend more time with. I will get an opportunity in a few weeks as we are also going to the transplant games. William is making his debut in the 25 metre 'run', ball throw and obstacle course. For him, it is all about fun and for us all to meet other families, many of whom we have already 'met' on facebook and other forums. I am looking forward to being able to cheer Justine on in her many events and to take some more photographs of her, hopefully on her way to winning medals. I am also looking forward to that drink in the bar we promised each other. Justine really is a total inspiration and a fantastic example of the difference a transplant can make. I really hope her dreams come true. I can't think of anyone who deserves it better and few things would make me more happy than being at the side of the track in August, watching her sprint towards that place in the World Transplant Games. Go Justine!!!