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A photo book of beautiful, intimate portraits exploring the reality of living with Cystic Fibrosis, a life-limiting genetic condition.
A photo book of beautiful, intimate portraits exploring the reality of living with Cystic Fibrosis, a life-limiting genetic condition.
169 backers pledged £5,099 to help bring this project to life.

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47 / A Life With Cystic Fibrosis

£5,099

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47 / A Life With Cystic Fibrosis is a series of intimate portraits of people living with CF and offers an insight into their attitudes to life and their condition up to and beyond the median predicted survival rate of 47.

Each portrait is shot in the same style, with the same lighting and presented in black and white. Alongside each portrait is a short extract from our conversation during the shoot that offers an insight into the individual in the photograph.

The choice to shoot all portraits in a consistent style is to remove distractions and focus on the individuals and their unique experience of living with CF.

I’ve spent over 8 months travelling around the UK visiting people living with CF, getting to know them and shooting their portraits and this book is the culmination of that experience. My hope is that this body of work will raise awareness not just of Cystic Fibrosis as a condition, but the real-life impact CF has on everyday life.

As a dad of a 2 year old who was diagnosed with CF at 3 weeks, this project is something I’m incredibly passionate about and I think the final product is a beautiful, powerful piece of work but I need your help to get the final book to print. I’ve set up various rewards for those of you that pledge so there’s plenty of ways for you to help, even if you can only afford to donate a few pounds.

As a backer, you’re guaranteed to receive an advanced copy of the book with any pledge of £18 or more.

After this campaign I’m going to be donating £5 to the Cystic Fibrosis Trust for every book sold to support the incredible work they do both in terms of medical research but also offering support not just to CF patients but to their friends, families and colleagues. We’ve experienced first hand just how important their work is and it’s a cause very close to my heart.

If you can help me reach my goal please give what you can. I can’t wait to share this project with you.

What is Cystic Fibrosis?

Cystic Fibrosis is an inherited condition caused by a faulty gene. You cannot catch Cystic Fibrosis, or develop it later in life. People with CF are born with it and will have it for life. It’s a genetic condition that affects more than 10,400 people in the UK. It affects the lungs, digestive system and other organs and can cause chronic infections and reduced lung function. It’s a life-limiting condition and the median predicted survival rate is 47 years old. 

The Cystic Fibrosis Trust are working towards a brighter future for everyone with CF by funding cutting-edge research, driving up standards of care and supporting people with the condition and their loved ones every step of the way.

To find out more about Cystic Fibrosis and the incredible work that the CF Trust do please visit https://www.cysticfibrosis.org.uk.

About me

My little boy Ellis was diagnosed with Cystic Fibrosis at 3 weeks old
My little boy Ellis was diagnosed with Cystic Fibrosis at 3 weeks old

I’m a full-time freelance web developer and photographer, husband, record collector and dad of three. My youngest, Ellis, is 2 and was diagnosed with Cystic Fibrosis at 3 weeks old.

My love of photography started at a young age on discovering my Dad’s old camera equipment from the 1960s. As a child I built a darkroom in my bedroom where I discovered the real magic of photography and a fascination for capturing moments in time in a fraction of a second. My passion has continued through to adulthood and is often driven by a desire to document my growing family with a quality befitting the importance they have in my life.

Since Ellis’ diagnosis my wife and I have dedicated ourselves to raising awareness and funds for the CF Trust and this project is a way for me to apply my passion for photography with my determination to raise awareness for a cruel, complex and often mis-understood condition.

My vision for the project

CF is a complex, cruel and often mis-understood condition that requires lifelong care whilst not always having visible symptoms. As such it’s often difficult for people to fully understand the severity of the condition.

My vision for the book was to showcase a wide range of people with CF of different ages, backgrounds and circumstances and to give an insight into their individual experience of living with the condition. Whilst the median predicted survival rate is 47, in reality this number has little meaning to a person living with CF but it’s still a widely discussed statistic. I was curious as to whether attitudes to the condition and life in general changed as people approached, and, hopefully exceeded that number.

Life with CF requires a daily routine of medicine, treatments and physiotherapy along with a progressive loss of lung function. This can often lead to a need for transplants, sometimes at quite a young age. What goes along with that is a complex combination of lifelong challenges that often lead to incredibly strong and resilient personalities who face the realities of mortality on a daily basis.

With this book I’ve tried to capture these personalities and my hope is that as a collected body of work, it gives an insight into the reality of living with this condition.

When I started the project I believed the book was the project and I sat down to work out what processes I needed to go through to produce it. However, it became clear quite early on that the book isn’t the project. The project is the time I’ve spent travelling around the country and getting to know these individuals and the challenges they face on a daily basis. From a personal point of view, the time I’ve spent with every person in this book has been an incredibly rewarding process. The book is a documentation of that process. I believe it’s a beautiful, powerful piece of work that I’m incredibly proud of and I can’t wait to share it with you.

About the book

The book features an introduction by myself and features portraits of 47 people with CF ranging from 4 to 61 years old. There are 47 portraits because 47 is the median predicted survival rate for someone living with Cystic Fibrosis in the UK today.

Each subject in the book is displayed across a two page spread - with a full page portrait alongside a short extract from our conversation during the shoot.

Example page spreads (In development)
Example page spreads (In development)

As well as the 47 subjects, I offered people who have lost loved ones to CF the opportunity to remember them so at the end of the book there’s a section remembering just a fraction of those who have been lost. Many of which sadly didn’t make it to 47.

Technical details of the book itself are as follows:

  • A4 Paperback
  • Approx 110 pages
  • PUR bound
  • High quality 200gsm internal pages printed with 4 colour digital process
  • Heavyweight 300gsm matt laminate outer cover printed with 4 colour digital process

All 47 portraits have now been shot and I've already started putting the book together. I’m hoping to have the book complete and ready for print soon after this campaign ends with a view to being available in time for Christmas.

As a backer, you’re guaranteed to receive an advanced copy of the book with any pledge of £18 or more.

No funds from this Kickstarter campaign will be donated to charity.

Risks and challenges

When I came up with the concept of this book there were a number of specific risks and challenges.

1. Finding volunteers

I expected it to be quite hard to find 47 volunteers that I could get to and that would be willing to take part in the project. I spoke with the children’s CF clinic that we attend and the adult unit about the possibility of handing out letters to patients looking for volunteers. I also reached out to a few people I’d seen in press campaigns and that had YouTube channels related to living with CF. I also set up a Facebook page and produced a video explaining the concept of the project and looking for volunteers to take part. This was shared by the CF Trust and I ended up overwhelmed with responses. I must have had 300-400 volunteers in the end, each of which I had a conversation with. I spent a good few months simply managing email and parallel conversations.

2. Working up a shortlist

So I’d hit my first target - I had enough volunteers. But how do you go from ~400 people to selecting 47? This came down to a simple case of logistics. I had too much equipment to easily jump on a plane or a train (not to mention limited funds for travel and accommodation). Living in Yorkshire I’m pretty well-placed for reaching a number of areas fairly easily and I focussed initially on people who were relatively close to me as that meant I could pop out to shoot on a case by case basis over the first few months.

I had a large number of volunteers in the Midlands and in Lancashire and the surrounding area and between those three key areas I had enough volunteers to reach my 47.

3. Planning the shoots

In order to minimise time away from home I decided to plan road trips to visit as many people as possible in a single trip but this brings it’s own challenges. I needed the subjects to all be available over the same weekend and then at specific times once I’d planned the most efficient route to visit everyone. Then comes the curve ball. One of the more unusual aspects of CF is that, due to cross-infection, people with CF aren’t allowed to mix with each other. Another side-effect of this is that in order to safeguard everyone involved, I needed to be considerate to each individual in terms of the order I visit in order to reduce the risk of cross-infection. This made the road trips a logistical challenge that took weeks of planning to achieve.

4. The shoots themselves

This was the longest period of the project and took over 6 months to complete. I knew I wanted to shoot every shot in a consistent style so I deliberately chose a lightweight setup as I was likely to be shooting in a wide range of spaces. This turned out to be the case. At one point I had the brolly sticking out of a doorway and have had more than my fair share of being squeezed into tight spots. Due to the nature of CF, anyone at any point could suddenly be taken into hospital unexpectedly so that needed to be taken into account.

5. Producing the book

Good quality photo books don’t come cheap. Whilst talking to volunteers and drawing up a shortlist I was also talking to printers about specifications and cost. Due to the relatively low print run getting a balance of cost and quality is a challenge and I knew I wanted to be able to sell the book at a competitive price. Eventually I found a printer who could help and their print samples were fantastic so I had a solid quote to base the rest of my costs against.

6. Meeting target

At this stage of the project most of the risk has passed. I found my volunteers, I worked out a way to get to them all, I planned the trips, I sent many, many emails, I shot all the pictures, I listened back to over 50 hours of recorded audio in order to write the text content of the book and I finalised printing costs. This book represents the culmination of nearly a year of my life where I’ve dedicated all my spare time to producing a piece of work that I believe in both artistically and as a means to raise awareness of a cause that’s very close to my heart. I’ve covered travel and accommodation costs out of my own pocket and have spent literally hundreds of hours making this project happen.

There’s a risk of course that I won’t reach my target but I’d like to think I can meet, and exceed it. I’ve met and spoken to so many amazing people during the course of this project and I’m hopeful there’ll be plenty of support. I’ve set a modest target to produce a limited edition run of the book. If I’m able to exceed the target, I’ll print more books.

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Support

  1. Select this reward

    Pledge £5 or more About $6

    Your name in the book

    Your donation and support acknowledged in the book (Your name or a nominated name).

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    Pledge £18 or more About $23

    Advance copy of the book

    Get an advanced copy of the book before it goes on general sale. As a thank you I'll personally donate £5 to the Cystic Fibrosis Trust.

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    Pledge £20 or more About $25

    SIGNED advance copy of the book

    SIGNED advance copy of the book + acknowledgement in the book (Your name or a nominated name). As a thank you I'll personally donate £5 to the Cystic Fibrosis Trust.

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    Pledge £45 or more About $57

    Matt Bond Giclée print + signed book

    A3 LIMITED EDITION SIGNED PRINT, Matt Bond 180gsm Giclée print (Lustre), unframed, printed with white border (any image from the book) + SIGNED advance copy of the book + acknowledgement in the book (Your name or a nominated name). As a thank you I'll personally donate £5 to the Cystic Fibrosis Trust.

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  5. Select this reward

    Pledge £350 or more About $446

    Your own photoshoot

    A personal portrait sitting with the photographer (travel to Leeds not included) + one A3 limited edition signed matt bond 180gsm Giclée print (Lustre), unframed, printed with white border (any image from your shoot or the book) + SIGNED advance copy of the book + acknowledgement in the book (Your name or a nominated name). As a thank you I'll personally donate £5 to the Cystic Fibrosis Trust.

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Funding period

- (30 days)