CALL it mothers' intuition but Jade Barnsley knew something was wrong.

Following a problem-free pregnancy, she welcomed her little girl, Lilly Amelia Scott, into the world on May 8 2015, but Jade instinctively knew something wasn't right. "I noticed something was wrong when she was born. She was feeding constantly, wanting milk constantly, it was like I wasn't feeding her and I was going through so much milk, I knew it wasn't normal," says Jade, who also has an eight-year-old son Lewis.

Jade also noticed Lilly's colouring and raised her concerns with her midwife. "She said she was jaundiced and it should go."

Further concerns were raised at the colour of Lilly's urine and stools but medical advice assured her everything was fine.

But when the jaundice hadn't cleared Jade pursued her concerns with her health visitor. She asked for a blood test to be carried out. The following morning she was told to take Lilly to hospital.

Further tests were carried out in the children's ward at Bradford Royal Infirmary and an ultra sound booked for the following day.

"I didn't sleep that night, I just didn't know what was wrong," recalls Jade.

The ultra-sound scan revealed Lilly's gallbladder wasn't functioning properly and further investigations at a specialist children's ward at Leeds General Infirmary led to the diagnosis of biliary atresia - a childhood liver disease affecting one in every 15,000 babies.

The cause is still unknown but inflammation develops within the bile ducts around the time of birth which leads to bile duct damage and reduces the flow of bile. Subsequently this causes scarring (fibrosis) of the liver. It also damages the bile ducts outside the liver preventing any bile flow into the gut and the gallbladder is also affected.

Recalling the diagnosis on May 26 last year - only weeks after Lilly's birth - Jade says: "I just felt like the world was swallowing me up."

She also recalls her emotion at seeing her partner of 14 years, Patrick, coping with the news. "I looked over and his eyes filled up and the blood drained from his face. It was painful to see him so upset."

An operation was scheduled and within two days Lilly underwent a nine hour "Kasai procedure" christened after the Japanese surgeon who pioneered the operation. The aim of the operation is to allow bile to drain from the liver into the gut.

"I was like a zombie and it didn't hit me until afterwards," recalls Jade.

"I kept thinking I wouldn't see her again."

Jade credits Patrick, who she describes as her 'rock' with helping her to cope.

"I couldn't have done any of it without the support and love of Patrick. He is the best dad and partner ever and even though he would tell you I'm the strong one, he got me through it. Nobody can ever understand how hard Lilly's condition is for us. At the moment she doesn't have a clue. She is so happy and content, always smiling and laughing. She is a true fighter, she is perfect to us and she's brought us so much closer together."

While in hospital with her daughter, Jade also missed her young son who, she says, adores his little sister.

When Lilly returned to the family home in Bradford Jade talks about the medication she had to get used to giving Lilly, who has other complications too related to her liver condition. Initially she recalls being daunted by the process - now it's part of their routine.

Although it isn't something the family have to face just yet, Lilly may eventually have to undergo a liver transplant and it is that situation which has prompted Jade to sign up to the organ donor register.

Eager for others to consider allowing their organs to be used after their death by others with life limiting conditions, Jade set up a Facebook page with the link 'biliary atresia like for lilly' which she hopes will also raise awareness about childhood liver disease and profile the charity, the Children's Liver Disease Foundation which is helping her share her experience with other families.

Regarding organ donation, Jade says she appreciates it is a sensitive subject and that people may find it difficult thinking about it, but she urges people to consider joining the register to help save lives,

"We don't need them when things happen to us but someone could," she says.

Her advice to other families in similar situations whose children have been diagnosed with liver disease is? "Stay strong and be there for your children. Babies are much more fighters than we are. They will grow up with this condition and you have to be strong for them."

Expressing her appreciation to those involved in Lilly's care, she says: "I know they are there if I need them whatever the future holds for us. We know we have each other and whatever Lilly goes through when she gets older she has us and always will. This is Lilly's fight not ours. We are here for her to guide her, to help her, a shoulder to cry on, anything she needs and if the time comes for her liver transplant our love and strength and care will hopefully get her through."

Jade says their experience has also made them put life into perspective. "It makes us appreciate the little things we take for granted and made us think about the future," she adds.

The Children's Liver Disease Foundation is the only charity dedicated to fighting all childhood liver diseases. The charity provides information to healthcare professionals, emotional support to families, funds research and acts as a voice for all those affected.

For more information, advice or support, call 0121 212 3839 or go visit childliverdiseae.org.