Sunday, 13 September 2009

Three Special Thank-Yous

Cherry, just 3 months after her kidney transplant


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!

Monday, 24 August 2009

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.

Sunday, 16 August 2009

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.

Friday, 7 August 2009

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.

Monday, 20 July 2009

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.

Wednesday, 15 July 2009

'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.

Friday, 26 June 2009

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//

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!!!

Thursday, 25 June 2009

Ladies who lunch in botanical gardens

This is the lovely Audrey. I had a wonderful morning with her on Tuesday, followed by a tasty sandwich and much needed cold lemonade - thanks Audrey! We really were 'ladies who lunch'. After so long stuck in hospitals with William over the past years, days like this are days that I haven't had the opportunity to enjoy for a long time and days that I will treasure as I look back over our early days enjoying life after transplant. It was a beautiful day so we decided to saunter around Cambridge Botanical Gardens. We wandered and nattered while I kept a look out for interesting locations. My favourite shot, and one I am holding back for the exhibition, was shot against something that is not immediately obvious as the choice shot in a botanical gardens bu was something I stumbled across and wanted to include in a photograph and I think it works well.
Audrey has cystic fibrosis, CF and her lungs are behaving themselves very well for her age. However, her liver was struggling a bit more with the disease and, after being diagnoses with 'CF related liver disease', Audrey was given a handful of extra pills to take and her liver was scanned as part of her annual review. It was during one of these routine scans that doctors discovered some worrying growths that turned out to be liver cancer. This is a difficult diagnosis for anyone to cope with but was further complicated by the fact that Audrey had just discovered she was three months pregnant. Audrey knew she could well be facing death and even planned her funeral. However, thanks to an experimental chemotherapy and the kindness of a family who donated their loved one's liver, enabling Audrey's diseased liver to be replaced, she is still her, 6 years on and is the very proud Mum of a gorgeous little boy. Audrey is an advocate for Live Life Then Give Life and more of her story can be read on their website here
It is great to meet so many inspiring people during these photo shoots. We certainly mixed the task of getting some great images with a most enjoyable time with a new friend. I am making lots of new friends as this project progresses.

Friday, 19 June 2009

Milk Shake and Cupcakes

Freya and Abby

Yesterday, I had a photo shoot which was a lot of fun and enjoyed spending time with two beautiful and special young girls. We went to London's East End to take some young and streetwise images. We even managed to incorporate some well deserved treats as we passed and American Diner with some fantastic milkshakes and cup cakes. Take a look at the gallery for some more images.

Freya and Abby are very best friends. They have lots in common, including first hand experience of donation and transplants. Abby is little sister to Emily who has already been featured in the project and is the subject of the blog here (as is Abby). Abby watched her sister become more and more sick and weak and then witnessed her bounce back to life after her double lung transplant. She talked a lot about her memories and feelings about Emily's illness and transplant as we were wondering around East London.

I was very interested to hear Abby's experiences as I am only too aware how tough things have been for Hope and Ellie at times through William's many months of illness and his transplant journey. Siblings often get pushed to one side when energy and worry needs to be focused on the sick child. There is always a feeling that there will always be time afterwards to catch up with the other children and make it up to them. One of the hardest things for me to accept our lives are settling after William's transplant is that I missed some precious time in Hope and Ellie's lives that can not be revisited of clawed back. Ellie is still only 9 and young enough for me to do the childhood activities we have missed. Hope though is 13 on Sunday. She was off catching up with her friends within the first hour of us all being back together and missed William's first outing, when his isolation period have finished, because she had arranged a revision session. She has matured into a teenage and I missed the close of her early childhood. It is one of my biggest regrets in all of this.

Hope is very mature and becoming quite the young lady. I wonder how she would cope if she were ever put into the same position as Freya was when she was 13. Freya's Mum became ill suddenly and was given just a few hours to live. Freya was her next of kin. During those final days, she was asked if she had considered organ donation. That is a huge question to ask anyone but for a 13 year old to have to make such a decision about her own Mother is just incomprehensible. Freya decided to donate tissue and bone and 14 people had their lives saved of transformed as a result. Her story is one of the bravest I have ever read and will always stay with me.

Freya urges people to think and talk about organ donation before the unthinkable happens so it is not all such a shock. Hope and I had a conversation about it today as she was looking though the photos in the gallery. Hope is registered to donate any part of her body but I now know that she wants to donate anything except her eyes. She knows I want any part of my body to be used for transplant if I were to die. I am a single parent to my girls and Hope is my eldest so I guess, technically, she could be asked the same question were anything to happen to me. Freya's presence among the images is a very powerful one and reflects her bravery. I hope it spurs other families to have the conversation Hope and I had today. Hope's friends have been having similar conversations since she has been talking about the project and the people I have been meeting.

Hope is lucky to have some amazing friends. They shopped for her dress for her confirmation on her birthday and are coming round to get her ready. They have stood by her through William's journey just as Abby and Freya have supported each other. There is always a lot of laughter in the house when her friends are here, That combination of mutual support and sharing fun together is central to Abby and Freya's special bond and I hope that is portrayed in the images.
There is something for me to take with me from both Abby and Freya's stories. I do my best to make things as easy as I can for Hope and Ellie and I hope they end up as happy and as lovely as Abby in their early teens. Her family is a huge inspiration to me. Freya's story, as all the stories included in the project, reminds me to make the most of every second and never take each other for granted.

Wednesday, 17 June 2009

Park Life!

Nelly enjoying her new found energy on the swings

Marcia at the end of a five mile walk and looking fantastic

Rahul has received two kidney transplants, the second from his brother
The weather has been glorious over the last few days and I have been able to enjoy it while working on the Gifts of Life Project. On Sunday, I went along to a sponsored walk in aid of a holiday fund enabling patients to continue with dialysis in a specially adapted and staffed holiday home. I have already introduced some of the people I met who are waiting for new kidneys. Rahul and Marcia have already received their gifts and were enjoying their new gifts of life to the full. Rahul has received two transplants. The most recent was donated by his brother who now lives in Singapore. He was very pleased to tell me all the things he, his brother and brother's family have achieved in life since then. Marcia is a beautiful and elegant lady. I have a lovely portrait of her which will be revealed when the exhibition opens. Her kidneys failed when a sudden immunological illness attacked them. She received an urgent transplant very quickly.
I enjoyed the sun in the park again on Tuesday when I went to meet Nelly. Nelly is a Live Life Then Give Life advocate and you can read more about her story here - although she is no longer waiting for her new kidney as she received it in January this year. The first thing that struck me about Nelly, and that I got to discover more and more through the day, was that she is full of fun and very playful. She kept asking me for jokes (my knowledge of which is pityful and I really must learn some new ones as they were useful in getting smiles and laughs). I was not surprised when she said that she really wanted to take the photos in her favourite park where she likes to play on the swings. There are more images of Nelly in the project gallery here Thanks to her Dad arriving home early, it was possible for us to get there. Nelly uses a wheelchair because of physical disabilities caused by her kidney disease. She has been able to walk short distances without her crutch since her transplant. It was lovely spending time with Nelly. She has had some ups and downs since her transplant. A few weeks ago I asked people to tell me their life story in 6 words to collate as an accompanyment to the images in the exhibition and photo book. Nelly told me hers on Tuesday. Life's a trampoline: Up and down. That sums up perfectly how it has been for Nelly, and reflects her playful personality too. Let's hope there are a long stream of ups from now on.

Monday, 15 June 2009

Four Lives in Hold

Victoria watching the world through her bedroom window

Victoria inhales life saving drugs through her nebuliser several times a day

David had his first kidney transplant in 1976. He is now awaiting his fourth new kidney

Trevor enjoying a picnic after a sponsored walk to raise money for a holiday home to enable people to go on holidays on dialysis

Ranjit has been waiting for a new kidney for a year now
Today, I travelled across to the North of London to see Victoria. Victoria has cystic fibrosis and, following a sudden and frightnening decline in her condition, has been waiting for a double lung transplant for two years. It was clear how laboured her breathing has become and it is now so exhausting for Victoria simply to stay alive that she is unable to even walk around her house with ease and spends most of her time resting on her bed. She is longing to get her call and her life back. She studies with the Open University in readiness to fulfill her career dreams when she has her new lungs and can't wait to be able to go and see the musicals that she once enjoyed so much. I found Victoria to be a lively and bubbly girl and could see how depressing it can be to mainly house bound and confined to a wheelchair when venturing out. It was agonising waiting the three months we did for William's small bowel transplant. Victoria has waited for over two years and Jess for four fo new lungs. I just can not imagine how it would be to have our life on hold and wait so desperately for that call for such a long time.
On Sunday, I met three men who know just too well how that feels. I was invited to meet walkers on a sponsored walk in Richmond Park in aid of The Charing Cross Holiday Dialysis Trust. The trust owns a large house and garden on the south coast in Emsworth,Hampshire. enabling kidney patients and their family and friends, to have a holiday and continue their dialysis in a purpose built unit by a renal trained nurse. It is a fantastic cause and I know how important it is to have a break from the stress of life dominated by medical procedures and treatment. I am so enjoying this summer, free of TPN and constantly living in hospital and being able to spend days out with the children. For many people with kidney disease, life is dominated by spending at least three days out of every week in hospital on dialysis. The waiting time for a new kidney can be many years. Richard has been waiting for two years, David has spent too many years of his life on waiting lists for his three kidney transplants and is now waiting for his fourth. Rahul has been waiting for a year. All this time spent with a life on hold, waiting for that call to enable it to be lived to the full again.

Saturday, 13 June 2009

Aaron - Urban Cool

This is Aaron. He is twelve years old and received a combined transplant of a liver and small bowel nine years ago. He has been a real inspiration to me as I love to think of William in nine years time, thriteen years old - a teenager - and running around with boundless energy like Aaron. Aaron's Mum, Cat is also wonderful and created the fantastic website 'Transplant Kids' I don't know where I would have been without the transplant kids forum over the past year. You can read more about Aaron and see just how far he has come and why he fills me with so much hope for the future here. As you will see, Aaron is sporty and adventurous. I couldn't photograph him in the mountains doing his snowboarding so chose to reflect his 'urban cool' style instead. It is funny how the things you walk past day after day, hardly noticing or maybe even seeing as something rather ugly, can suddenly catch your eye in a whole new way when looking for locations to reflect a particular mood or style. Today, a big 'ugly' piece of corregated steel in a tatty car park on a Birmingham side street did just that.
William, Hope, Ellie and I spent today in Birmingham to join in the intestinal transplant family day. This was a fantastic day where our wonderful team took the time out to share the current state of the transplant programme with us (which was hugely encouraging and I will blog about that on my 'My Journey With William' blog over the next couple of days) as well as provide useful information sessions, play for the children and a party in the afternoon. To avoid being up at 5am to get there on time, we stayed in the hotel on Friday night. This was the hotel I stayed in throughout William's transplant recovery and I have walked up the road from there to the hospital numerous times through all sorts of weather. It was there that I found the location for Aaron's photo shoot. I am thankful to him, Cat and his brother Jamie for getting up that little bit earlier to make time to take the photos first thing this morning, before the day began. We had some fun doing it and I think it reflects Aaron very well. William certainly enjoyed meeting him and I hope they will enjoy catching up with each other on many more family days to come. In another nine years time, Aaron will be in his twenties and it will be William who is cool and trendy rising teen. We heard a lot today to fill us with realistic hope that this day will come.

Wednesday, 10 June 2009

Many, Many Happy Returns

A moment of reflection with the teddy bear given by the team who transported Eloise on her transplant day

Eloise with her treasured box of wooden hearts, one received as a special gift each heart birthday

What birthday is complete without a birthday cake, complete with candles?!
I felt really honoured to be invited to photograph Eloise today, on her 7th Heart Birthday. Happy Heart Birthday Eloise!! Doesn't she look fantastic!! Seven years ago, Eloise was critically ill and needing a new heart urgently. She waited just four days before receiving a transplant at the Freeman hospital in Newcastle and became the worlds oldest (at the time ) ABO mismatch heart transplant recipient. Eloise was proud to show met he teddy bear that came with her heart as it was given to her by the ambulance crew that brought it to her at the time of her transplant.
She also showed me her special box of painted wooden hearts, one given to her on each heart birthday. Of course, she was especially happy to show me the wonderful hedgehog cake she had chosen for this year's birthday celebration.
It was a really happy and colourful shoot. It was a bit of a whistle stop visit though as the tube strike meant I had to travel the long way round and make several connections rather than dare to try and cross London. This wasn't helped by me suddenly thinking I needed to be on the train ahead of the one I had been planning to return on. It was no bad thing though as Eloise had taken the morning off school for her photo shoot and had a wonderful tray of heart decorated cakes ready to treat her class with. She wasn't the only one treated. I was given a lovely card and a beautiful photo frame which I think will look great with one of these special birthday pictures in as a souvenier of the Gifts of Life project and today's special shoot. I will always treasure it Eloise, thank-you.
It was a lovely, happy day and so encouraging for me as we are still in the early days after William's transplant. I told William all about Eloise's special birthday and he was, naturally, very intrigued and excited about the idea. We will definately find our own special way of remembering his wonderful donor and celebrating his new life. I hope there are many, many more celebratory heart birthdays for Eloise, for William and for everyone else too.

Friday, 5 June 2009

A Story of Two Gifts and a Little Miracle

'I've Got You Back!'

'Little Miracle'
So far, the transplant recipients I have met and photographed have had time to enjoy their new organs and to give thanks for and celebrate their gifts of life. This is Ava and she has a long way to go along her journey recovering from her liver transplant. I say liver transplant. What I really mean is 'liver transplants'. Ava received a life saving liver transplant a month ago. Sadly, there were complications and the transplant failed, leaving her without a functioning liver. She was listed for a super urgent second transplant. Ava's other organs began to fail, she experienced a cardiac arrest and her parents were told that there was nothing more that could be done and they would need to begin to think about turning off all the life support that was keeping their daughter alive. Ava's Mum. Laura, said that Ava must have heard this because she began to fight back. Five days later, Ava's second gift of life was given. She is making steady progress but her organs have taken a bashing from it all and it will take time for her to recover fully.
Laura asked me to photograph Ava and I was honoured to do so. She is beautiful and loves posing for the camera, even at the moment while on so many drugs and machines. The shots you see here are in natural light but were not as sharp as I would have liked so I went back later and re-shot with fill in flash. By then, she was tired, but kept opening her eyes when she heard the shutter go and tried to interact with the camera as best she could. I can see what a little fighter she is! I am sure her family have lots of days ahead to enjoy the full impact of her new life but, for now, it was wonderful to capture that relief that comes with knowing you have your precious child back. I am so glad Laura asked me to take these and invited me to use them in the 'Gifts of Life' project. These images are unique in showing the early days after transplant and the project is richer for being able to include them.

Wednesday, 3 June 2009

Loss, Sadness and Pride

The quay where Debbie often walked with Jade

Debbie looking over photos of Jade

On Monday, I had the privledge to meet Debbie. One day, her seven year old daughter, Jade was out playing on the pavement just in front of their home. Debbie was unpacking the shopping in the house when she suddenly heard a bang. When she went out to see what had happened, she was confronted with something every Mother fears. Jade had been hit by a car and was very severely injured. Debbie watched the paramedics and hospital staff do everything they could for Jade but knew as soon as she saw her on the road that she had gone. One of the most amazing things Debbie said to me was that she was pleased they had done all the work they did to try in vain to save Jade because it kept the organs alive and healthy. What an incredibly generous thought to have. Jade saved four lives. You can read more about her here on the UK transplant website "Because of Jade’s gift a ten-month-old baby girl and a 17-month-old baby boy got a new heart and liver, while two adults also got a second chance in life with new kidneys and a pancreas" (UK Transplant). You can also see more about her on her beautiful memorial site here
For the photo shoot, Debbie took me to a lovely little place by the river close to their home. There was a Quay where she used to walk with Jade and a little playground where Jade would play on the swings, climbing frame and slide. It was tremendously moving to be with Debbie there and photograph her doing these things alone. It was also very brave of her to do this at all, let alone take me to a place where there are so many memories of Jade. Debbie is a brave person. She is very involved in campaigning for more people to donate their organs for transplant. She is also immensley proud of her daughter for that last act she did in saving so many lives. For Debbie, something very positive came out of that tragic day.
Jade also has a younger sister who was playing with her at the time of the accident and saw it all happen. They are a truely inspiring family for the way they carry on with great sadness but with so much positivity. When we were waiting for William's transplant and he was so often so very unwell we hoped and prayed every day that his call would come. I knew that the thing that I was fearing the most, that I would loose William, was the very thing our wonderful donor family would be living through on the day we got that call. I used to hate myself for wising this on anyone and really struggled with it. That was, until one day someone told me I was not waiting for a Mother to loose her child, sadly, that is happening every day. I was waiting for a Mother to say yes. I think of the Mother who did say yes every single day. In my mind, I thank her every single day, her and the child whose gift saved William's life and her whole family. It was wonderful to meet Debbie and see that, although she lives with a sadness that only a parent who has lost a child could possibly understand, she also lives with the pride and joy that comes with the knowledge that her precious Jade is a life saver and that was made possible because they said yes. I was really happy with some of the images that were captured for the Gifts of Life exhibition and book. I think they reflect Debbie's sense of loss, of sadness and of pride. I hope so, I really do.

Saturday, 30 May 2009

'So Why Isn't Ubaid Growing Up Any More?'

The Last Ever Photo Taken of Ubaid and One From Happier Times

Zulf and Nyila Ali - A Truely Inspirational Couple

Remembering Ubaid Just Along the Corridoor From Where He Died Waiting For His Transplant

And My Little William Enjoying Life 6 Months After The Transplant Ubaid Was Waiting For
Life Is So Unfair Sometimes!!
Yesterday's photo shoot was one I was really looking forward to and really not all at the same time. Shortly after William was listed for his small bowel transplant, I received an email from Nyila Ali. She was offering support as she knew how it felt to have a life revolving around intravenous feed (TPN) and line infections. She knew all about living long periods of time in hospital and she knew all about waiting for your son's urgent small bowel transplant. Very sadly, Nyila was not able to offer any experience of receiving that life saving transplant. Two weeks before we arrived at Birmingham Children's Hospital for William's transplant assessment, Nyila and Zulf were kissing their son, Ubaid, goodbye in that same hospital, just along the corridoor in intensive care. Ubaid died of liver failure before organs could be found for the small bowel and liver transplant he so desperately needed. I have been following Nyila and Zulf's story ever since I first heard of them. They have been heroic in their media work to promote organ donation and often pop up on my google alert for 'small bowel transplant'. They are awesome and I was so pleased when Nyila mailed me to say they were interested in taking part in 'Gifts of Life' . I was really looking forward to meeting them but so wish it were in two weeks time, at the small bowel transplant recipient family day that I would be meeting them, not like this. As a mother of a transplant recipient, I feel a kind of guilt about those families who never got to enjoy the new life we are living. Guilt is not really the right word as it implies I wish William had not had his transplant. Of course I am so glad he did and I am glad it is my son who got his call and is alive but I wish Ubaid had as well and so had everyone else who died waiting.
Nyila and Zulf decided to revisit the hospital where Ubaid spent so much of his life, and where he died, for their photo shoot. This was, of course, the very place where our new life began with William's transplant which only highlighted the very different paths our lives ended up taking. I was really worried that I would get overcome emotionally during this shoot. I felt it before, I felt it on the way home and I feel it when I look through the images I captured yesterday. I warned Nyila that I may get emotional and apologised in advance. Nyila and Zulf were so wonderful and I felt relaxed with them as we shared our very different experiences, asked each other questions and chatted away. I was also very focused on taking pictures that would portray their feelings. We were really blessed by some fantastic window lighting along the hospital corridoor and in the chapel. The chapel is a place where all families, whatever their faith or belief, find themselves seeking a quiet moment. The wards Ubaid where spend so much time are along the same corridoor and Zulf and Nyila had also sat in there during these times and were happy to be photographed in there. William was with me for the day and spent the time playing in the chapel while we were taking the photos. It is his favourite place in this hospital and he was enjoying the time there, knowing no one as going to take him back to the ward for painful treatments or 'special sleeps'. This made it all the more poignant.
Before the shoot, we had lunch with the lovely Pauline from the donor family network. I have mentioned before the fantastic transplant network that exists. Pauline had followed William's story and came to see us many times during our transplant stay. She features often in our story over on my own personal blog and has become a very good friend. It was really nice to spend some time with her today and, as you can see, Wills had a lovely time with her. I love that picture, their hands held represents to me the unity that exists throughout the wonderful network of people who are involved in transplants and organ donor awareness. What a contrast that picture is with those of Ubaid, held by his parents.
William is very taken by the people he meets and is beginning to take things on board about them. Pauline is a funny lady who makes him happy and has made him laugh when he was feeling unwell, Emily is that happy lady who plays the piano to him, reads him stories, has lots of fun and has new lungs. William was asking all about Ubaid. At one point, he suddenly announced that Ubaid must have no energy if his new tummy was never found - a very interesting insight for me into how William is feeling himself these days in comparison to before transplant. On the way home, William asked 'So why isn't Ubaid growing up any more?' He knew the answer and was seeking confirmation. Ubaid isn't growing up anymore because he never got his new tummy. For the first time, I am going to ask anyone who has stumbled across this blog to help me to make sure that more people share William's story than Ubaid's from now on. Please think about organ donation. Both Ubaid and William needed organs from children so please think about that too. This is the end of my blog for today. Please go here next.