Liver Stories

Here are the real life stories of people who are affected by childhood liver disease.

If you would like to share your own story, please click here.

Michael’s story

When sixteen year old Michael became ill in October 2017 his local hospital, the Royal Victoria Sick Children’s hospital in Belfast, referred him to the specialist children’s liver unit at Bimingham Children’s Hospital. It was here that tests revealed that not only did  Michael have the rare liver disease, primary sclerosing cholangitis, but that his […]

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Ethan’s story

When Ethan was born in March 2014 he was a happy and healthy baby. It was shortly after his first birthday, however, that his parents, Daniel and Lucy, noticed that something wasn’t quite right. Daniel takes up the story. Ethan developed a severe rash on his legs and began to lose weight. He was taken […]

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Tammy’s story

Ollie was just a couple of days old when doctors at hospital in Belfast told his parents that they thought he might have Alagille syndrome, a rare genetic condition which can also affect the heart, kidneys, eyes and bones as well as the liver Months of tests and hospital stays followed until Ollie’s diagnosis was […]

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Halima’s story

Jemima and Adebowale’s youngest child, Halima, was born on June 8th 2017. Eight weeks later she was diagnosed with the rare liver disease, biliary atresia which means her bile ducts were damaged and her liver was not functioning properly. “At nine weeks old Halima underwent surgery known as the Kasai procedure to try to establish […]

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Why Harrison loved going wild

Eight year old Harrison was born with the rare genetic condition, autosomal recessive polycystic kidney disease, a condition which also affected his liver.. It meant that he was very poorly from birth and had problems with his blood pressure, feeding and physical development “His first year of life was touch and go” explains Harrison’s dad, […]

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How one weekend helped our family

The Jawwad family’s life was turned upside down in August 2017 when their daughter Maham, then 15, was diagnosed with liver cancer. In addition to four sessions of chemotherapy, Maham was told she needed a liver transplant but the first operation in February 2018 was unsuccessful and she had to undergo a second just three […]

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Thaminah’s experience brings added empathy to nursing career

A student who was diagnosed with the incurable condition, auto-immune liver disease, two years ago, was so struck by the difference good nursing can make, she is now embarking on her second year of a nursing degree at the University of Birmingham and plans to specialise in liver care.   Nineteen year old Thaminah Chowdhury, […]

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The Transplant Girl

We love to share our young people’s stories on our website and we know how valuable many of our families find them. Twenty two year old Akua Kezia, who is in her final year studying for a degree in  Probation and Community Justice, has taken that sharing a stage further by publishing her own book. […]

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Steven’s plea for organ donors as he looks forward to a fresh start

A 23 year-old man from Stoke Ash is looking forward to taking up his place at university this year after a lifetime of health problems has severely disrupted his education. Steven Featley was born with the rare liver disease, biliary atresia. He received a life-saving transplant at Kings College Hospital, London, when he was just […]

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Halima’s story

Jemima and Adebowale’s youngest child, Halima, was born with the rare liver disease, biliary atresia. Here Jemima tells her story.

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