A Lisburn mum is trying to raise awareness of a rare liver disease her baby daughter is suffering from.
Marianne Johnston’s youngest child Lucy Ellen, aged four months, was diagnosed with biliary atresia at just a few weeks old.
Biliary atresia is a rare life threatening condition that effects 1 in 20,000 babies.
At the tender age of five weeks Lucy Ellen was moved from the Ulster Hospital to Birmingham Children’s Hospital where she underwent a Kasai procedure which involves removing the blocked bile ducts and gallbladder and replacing them with a segment of the child’s own small intestine.
The baby was discharged two weeks later but showed no sign of improvement and her parents Marianne and Edward have since been told that the operation was unsuccessful and that their daughter may need a liver transplant.
Marianne who has two other children Dylan, two and Ryan 10, who has a severe learning disability, says she and her partner Edward were devastated at the news.
“We were hopeful that the surgery would work but Lucy Ellen is still very sick and if she is required to have a transplant family members are hoping to be assessed to be become a live donor for her,” Marianne explained.
She continued: “There is very little known about this condition with only a handful in Northern Ireland diagnosed.
“Even a lot of professionals- GPs, midwives and health visitors don’t know much about this condition.”
Just last week a fundraiser ‘Lucyfest 2014’ was held to raise money for three charities chosen by Marianne and Edward. These include the Children’s Liver Disease Foundation and Ronald McDonald House in Birmingham and the Royal Victoria Hospital Liver Support Group in Northern Ireland.
Lucy Ellen’s family would like to thank all those people who have supported them in recent months as well as those who came along and supported the event at Hagues.
The family have extended thanks to the bands that played at the fundraising night as well as the organiser Ashley Smith from Smoking Tongue.
If you would like to support the charities please visit www.justgiving.com/Marianne-Johnston2