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.
Sophia (Age 13 Months)
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 prevent brain damage, she had to have vital brain surgery and was on the operating table for nearly 6 hours.
Phoebe (Age 7)
“Having a child is the most amazing thing in the world – but it can also be the hardest. Like any dad, I just want to take my daughter’s pain away. I feel so helpless that I can’t. No matter how much she’s hurting, Pheobe always bounces back. Her beautiful smile gives me strength every day. When she grows up she wants to be a nurse, just like her guardian angels at the children’s hospital.” - James, dad to seven-year-old Pheobe, who has Currarino Syndrome.
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.
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.
Noah & Ruby (Age 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.
Jordan (Age 15)
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. 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.
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.
Sultan (Age 16)
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.
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.
Thomas (Age 4)
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.
To see a more detailed overview of the ‘Stars of Steelhouse Lane’ project click here.