In September 2016 I was able to achieve a milestone I only dreamt of since picking up a camera. I was given the amazing opportunity to exhibit my photography for the first time in my life. Since the start of July I worked closely with Birmingham Children's Hospital to help produce their 'Stars of Steelhouse Lane' project, which focuses on the lives of 11 children living with rare or undiagnosed conditions.
I photographed the children over the space of 2 days after setting up a mobile studio inside the hospital. Each child arrived at the mobile studio with their family, where we spent an hour getting portraits and gathering information on what life is like for them. We wanted to photograph the children wearing a 'star badge' to tie in the concept of the 'Stars Of Steelhouse Lane' which was a great but subtle way to bring in the brand colour of Birmingham Children's Hospital.
The outdoor exhibition ran throughout the whole of September in Birmingham City Centre (Victoria Square & along New Street). It featured 22 portraits I took of the children along with stories gathered from the children & families about how they cope with day to day life. Below you can see all of the portraits and their stories, as well as what the outdoor exhibition looked like when it was on display. You can still donate to this great cause via Birmingham Children's Hospital's Just Giving page.
1. THE PORTRAITS
KADIE-LEIGH (Age 2)
Two-year-old Kadie-Leigh’s condition is so rare that it still remains undiagnosed. Her family only know of three other children in the world with the same disorder – a condition which affects her kidneys and bladder. Before she was born, mum Ami was told Kadie-Leigh, from Nuneaton, wouldn’t survive. After spending the first 11 weeks of her life in hospital, Kadie-Leigh is now, as nan Teresa says, “a bright, chatty and beautiful little miracle,” who has been through such a lot.
Because of her condition, Kadie-Leigh is susceptible to urinary infections, so she attends regular check-ups at the children’s hospital to monitor her renal condition, as well as her health, diet and wellbeing. But all of this never stops her doing what she loves the most – being a true little Princess and playing make-believe with her friends at nursery. Though Kadie-Leigh is incredibly brave, Teresa worries about how much more she will have to deal with as she gets older. However, promises to support her every step of the way, alongside Ami and Kadie-Leigh’s big sister, Karys.
NOAH & RUBY (Ages 8 & 6)
Brother and sister, eight-year-old Noah and six-year-old Ruby, both have a rare inherited metabolic condition called Glutaric Aciduria Type 1, an illness which turns the protein in food into a toxin that affects the movement part of the brain. Whilst the pair from West Bromwich tackle their condition side by side, Noah suffered a metabolic stroke prior to his diagnosis and as a result, he has a separate condition called Dystonia, which causes spasms and muscle stiffness and means he is unable to walk or talk. But despite their differences, both siblings must follow a strict diet and take medication every day to ensure toxins don’t build up in their bodies.
Noah, nicknamed “smiler” for his happy, cheeky personality, wasn’t diagnosed until he was 10-months-old and as a consequence, is more severely affected than his younger sister, who, thanks to early intervention, was diagnosed shortly after birth. Having two children with a rare condition would be hard work for any family, but mum, Rebekah and dad, Arron, also have six other children, meaning life is always exceptionally busy. Despite the constant worry that eating the wrong foods could have catastrophic consequences for Noah and Ruby, Rebekah never wants them to feel afraid and hopes they will continue to develop as far as they can. “It’s not about perfection,” she says. “I just want them to make as much progress as possible and be as happy and healthy as they can be.”
MATAB (Age 11)
Eleven-year-old Matab, from Hodge Hill, Birmingham, spent the first 10 years of her life feeling “angry and lost,” as she didn’t know what was wrong with her. Only last year did she experience a huge sense of relief when she finally received a diagnosis of Gaucher’s Disease. A condition which identified that the enzyme in her body which breaks down certain fatty substances wasn’t working properly, causing a build-up in her organs.
Ever since Matab can remember, children have called her names because of the way her condition has made her feel and look. The most common organ that Gaucher’s Disease affects is the spleen, which causes Matab’s stomach to become swollen and appear enlarged. But Matab doesn’t let the bullies get her down, describing herself as “special and unique.”
SOPHIA (13 Months Old)
Thirteen-month-old Sophia, from Mid Glamorgan, Wales, was born with a rare cranial condition called Mercedes Benz Pattern Craniosynostosis. During pregnancy, a baby’s skull has small gaps in it to allow it to move and grow during birth. But in Sophia’s case, her skull had fused together at the back of her head – in the shape of the Mercedes Benz logo – which stopped it from expanding in the womb and placed immense pressure on her growing brain.
To ease Sophia’s condition and prevent brain damage, she had to have vital brain surgery and was on the operating table for five and a half hours.
Her mum Katie described this as “the longest hours of her life.” Since then, Katie and Sophia’s dad, Mark, have been backwards and forwards to Birmingham from Wales for her essential scans and check-ups. Their gorgeous baby girl has her whole life ahead of her, but they don’t know what the future holds. All they know is “Sophia is in the best of hands,” and a new Rare Diseases Centre would provide world-class facilities to support her world-class care.
PHEOBE (Age 7)
Seven-year-old Pheobe is a strong-minded, determined and brave young lady who has an extremely complex rare condition called Currarino Triad Syndrome. Together with her mum, Amy and dad, James, Pheobe has been visiting Birmingham Children’s Hospital non-stop since she was 24-hours-old. Most recently, she was in hospital for three months, undergoing a total of eight operations. Pheobe adores her “guardian angels” at the hospital and her favourite teddy, Moo Moo, is always by her side.
Pheobe’s mum, Amy, had to give up work when Pheobe was born to be able to complete her huge care regime. But inspired by her incredibly positive attitude, despite the pain she’s often in, her family manage to cope. Pheobe gives them strength every single day. As James explains: “It becomes your life. You don’t go home. You stay in hospital every night and care for and support your child.” Pheobe’s condition has meant she has had over 20 admissions to hospital, often with stays lasting over a month, with Amy and James staying by her side. Her care has then continued at home with on-going visits to Birmingham Children’s Hospital to monitor her progress.
JORDAN (Age 15)
At six-weeks-old he was diagnosed with Klinefelter Syndrome – a condition where boys are born with an extra ‘X’ chromosome (packages of genes found in every cell of the body). While this syndrome is fairly common, in Jordan’s case, rather than having one extra ‘X’ he has three or four extra ‘X’s’, so he’s classed as the 48/49 mosaic of Klinefelter Syndrome, which is extremely rare. His mum and dad often worry about what might happen when they are no longer able to care for him – and as Jordan can’t talk, their concerns are only amplified. Now coming to the end of their time at Birmingham Children’s Hospital, they both wish a children’s Rare Diseases Centre had been available from the beginning of their journey living with a rare disease.
Fifteen-year-old Jordan, from Perton, Wolverhampton, is described by his mum Caroline as “15-years-old, going on five.” Jordan loves playing with his toy cars, trucks and planes but he requires constant support and care from his parents, including washing, feeding and dressing. Jordan struggles with poor muscle tone, learning difficulties, anxiety, cardiovascular disease, autoimmune disorders, as well as poorly functioning kidneys. He’s had many operations, including open heart surgery. Jordan has been in and out of hospital all of his life. Caroline and her husband, Mick, were told Jordan would never walk. But at the age of three, he defied all the odds and he took his first steps. “We’ve fought for Jordan from day one and we’ll keep on fighting,” says Caroline, but his future still remains unclear.
RACHEL (Age 11)
Eleven-year-old Rachel, from Solihull, says her condition “gets in the way of being normal” – but she’s determined to be like everyone else. At seven-months-old, she was diagnosed with a painful form of Achondroplasia, a bone growth disorder that causes disproportionately short stature, arms, legs and fingers, as well as specific facial features, including a prominent forehead.
Throughout her life, she’s experienced many people staring at her and calling her horrible names. When she’s upset, she turns to her older brother, Matthew, as he always encourages her to believe in herself. She says he is her biggest inspiration. Most recently, Rachel’s strong-minded spirit meant she has completed her Year 6 SATs in hospital whilst on bed rest. Outside of hospital, Rachel loves to bake and dreams to one day be a professional pastry chef and win the Great British Bake Off.
THOMAS (Age 4)
Four-year-old Thomas, who recently celebrated his birthday in hospital, is a very chatty little boy who loves his play dough and watching musical films on repeat – Mamma Mia and Les Misérables are his favourites!
Tommy, from Springfield, Shrewsbury, has been diagnosed with End Stage Renal Disease (ESRD), which means his kidneys can no longer support his body’s needs and he requires a life-saving transplant. Neither of his kidneys developed properly in the womb and as a result, his right kidney has a function of four per cent and his left kidney does not work at all. For the last three years, brave Tommy has had to undergo dialysis four times a week, for four hours each time. He’s also on a strict, low phosphate and potassium diet, so he eats differently to all of his family, which includes mum Emma, dad Daniel and his three older brothers, Sam, Joe and Ben.
Life on the transplant list has been incredibly stressful for his entire family. “It’s such an anxious time,” says Emma. “Our second youngest son Ben has had to have counselling as he’s so worried that his little brother is going to die”. Tommy’s family really hope they get the all-important call soon, so he can live a much better life. “My boys just want their baby brother back,” adds Emma.
MATILDA (Age 7)
Matilda, from Walsall, is a bright and cheeky seven-year-old, who is one of only a handful of children in the world to have an extremely rare genetic disorder called Sensenbrenner Syndrome – a multi-system disease that affects many parts of her body, including the liver and kidneys.
As so little is known about Matilda’s condition, it took three years for her to be diagnosed. A few years ago she received a kidney transplant and it is likely she will need a liver transplant too in the future. Besides her kidney and liver problems, Matilda also suffers with an enlarged heart valve, short limbs, a short rib cage and craniofacial problems, meaning she spends a great deal of time at Birmingham Children’s Hospital, often being admitted for several weeks at a time. She also requires round the clock care.
Matilda’s mum, Michelle, and dad, Les, struggle with the constant upheaval and disruption to their family life, especially as Matilda has two older sisters, Megan and Molly. “She has good days and bad days – it’s so upsetting to see her distressed,” says Les, but the family pulls together despite how hard it can be and just takes each day as it comes. For them, a new Rare Diseases Centre would be incredible. It would help them to “navigate the healthcare system” and find the answers, information and medical developments they have been searching for all of Matilda’s life.
SKYE (Age 8)
Eight-year-old Skye, from Wolverhampton, has a condition called Williams Syndrome – a rare genetic disorder that affects many parts of the body and is characterised by mild to moderate learning difficulties, heart and kidney problems and developmental delays. Her condition is so rare, Skye wasn’t diagnosed until she was three-years-old and she’s never met anyone else with the same syndrome. To date, Skye has had seven stays in hospital and undergone numerous operations, including open heart surgery. When she was born, doctors thought she might not live for more than 24 hours, but she’s still fighting today and has grown to be a happy, sociable little girl, who adores Olly Murs.
Her disorder has presented her family with many challenges – the biggest being not knowing what the future holds. “There is still very little information about Williams Syndrome and there are a lot of unknowns,” says Skye’s mum, Laura. “It’s just a case of making the most of every single day”. Whilst it’s been a long and difficult journey so far for Skye and her family, Laura is grateful for every moment she has with her daughter. “The staff at the children’s hospital have helped us through some very tough times,” she says. “I’ve been given the chance to be a mummy to a very special little girl and this new centre will help me to continue to make incredible memories.”
SULTAN (Age 16)
Sultan is a popular 16-year-old lad who always wears the brightest of smiles. Sultan has a condition called Morquio Syndrome, which is a life-limiting disease that causes progressive impairment throughout his body, including the heart, bones, respiratory and central nervous system. His condition has also affected his growth and his joints are overly flexible and unstable, making it hard for Sultan to complete everyday activities independently. Yet no matter what battle is thrown his way, Sultan, from Moseley, is determined to make his dreams a reality.
“Sultan had an ‘epic’ night recently at his high school prom, arriving in style after he swapped the traditional limousine for a St John Ambulance. He also has future aspirations to be a world-famous Game Developer. For any young boy, coping with a rare disease would be challenging but brave Sultan (who prefers to call himself ‘fearless’ as brave is “so not cool”) doesn’t know anyone else with the same condition as him. He’s been a patient at Birmingham Children’s Hospital for 12 years, most recently completing his GCSE’s as an inpatient.”
2. EQUIPMENT & SETUP
For the portrait sessions I put together a simple one light studio set-up in front of a black background. Every single portrait was shot using a Nikon D750 and a Nikkor 85mm f1.4G lens, and the strobe light was an Elinchrom D-Lite One RX Head shot through a soft box (thanks to the awesome guys at The Flash Centre in Birmingham for helping me out with this). I took along my Manfrotto BeFree Tripod and used it whenever the situation needed it (an example of when I didn't need it was when 13-month-old Sophia crawled all over the floor, so I had to lie right down onto my stomach to get the shots I needed). All of the images were organised, re-named, edited and exported through Adobe Lightroom where I then made my final touches & sizing through Adobe Photoshop. All of my equipment was carried in my trusty Think Tank Airport TakeOff™ & my Peli 1510 hard case. One thing that I always find handy to take along is my Think Tank Pixel Sunscreen V2.0, this allows me to view & judge my images properly to make sure i'm getting the shot I need. Lastly, for extra backup a photographer has to have extra SD Cards incase of failure or a full card. Due to this, I always put my Think Tank Pixel Pocket Rocket™ in my bag wherever I go, plus it also fits right in your pocket (the clue was in the name!).
3. EXHIBITION ON DISPLAY
Below you can see a few photos I took whilst the exhibition was on display in Birmingham in both Victoria Square and along New Street.
4. PUBLICITY COVERAGE
Whilst the exhibition was on display it was great to see that the work got a great amount of coverage.