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.