Real Voices

Real Voices

Meet some of the children and families affected by liver disease...

Lily

Sarah and Dave were thrilled when their daughter Lily was born in May 2005. But their joy was short lived as two days later Lily became jaundiced, was extremely sleepy, had pale stools and dark urine.

Lily was diagnosed with biliary atresia; a disease in which the bile ducts become progressively blocked leading to irreversible liver damage.

Sarah says, "Having a baby completely changed our lives but having a baby with biliary atresia turn everything upside down, our world fell apart. We didn't realise or understand the enormity of the illness and it was hard to accept at the beginning. It was a rollercoaster of emotions, thinking why did this happen to us, was it our fault - and we had a complete fear of losing our baby."

Lily in hospital after her kasai operation

Lily underwent a corrective operation called a kasai when she was seven weeks old and since the operation has made good progress. However she will require daily medication for life and could require a liver transplant in the future if her condition deteriorates.

CLDF family support officers met with the family shortly after Lily was diagnosed; "We were given lots of useful information and literature and told of the support available. It's extremely reassuring to know they are there and understand what we are going through. The Foundation has been a tremendous support and it is also great to know that their research programmes are working towards hopefully one day finding a cure."

Lily living life to the full in 2006

Jordan

Jordan was a happy and healthy eight year old. Then in June 2005 he woke with pains in his chest and his abdomen became increasingly swollen.After initial check ups at their local hospital Jordan was transferred to Birmingham Children’s Hospital with suspected acute liver failure. After further tests Jordan was diagnosed with ‘Wilson’ - an inherited condition whereby copper is not extracted properly from the body which can lead to liver or neurological problems.

Mum Zoe says, “It was all so sudden. The first two weeks in hospital awaiting diagnosis were the worst, with lots of tests and Jordan being very sick and tired.I slept on a camp-bed beside him and tried to stay positive for him but it was devastating.”

Medicine treatment did not work and Zoe and husband Paul were told that his only hope was a liver transplant. Luckily a donor organ became available in time and Jordan received his life saving transplant in July 2005.

Zoe continues, “We treasured every moment before Jordan became ill but everything is even more special now. Jordan will have to take medication for life but we try to carry on as normal. Jordan is an inspiration and a very special boy, he has been so brave.”

Zoe adds, “We met with a CLDF support officer a week after being in hospital. We received lots of information; I wanted to know everything I could about Wilson’s and what we faced and it was great to know that they were there to support us. Jordan and myself also attended CLDF’s annual conference in October 2005 and this was very informative and a nice opportunity to meet other families.”

Jordan and mum Zoe

Lucy

When she was four Lucy became jaundiced and starting complaining of stomach ache.   Doctors told parents Sadie and Mark that they suspected Lucy’s liver was not functioning properly and tests were carried out over the coming weeks – firstly at their local hospital and then at  Birmingham Children’s Hospital when Lucy’s condition began to deteriorate.  After a number of weeks Lucy was diagnosed with autoimmune liver disease – a disease caused when the body’s immune system malfunctions and attacks part of itself, in this case, the liver.

Mum Sadie says, “After so many weeks of not knowing what was wrong and seeing Lucy suffering and not being able to do anything to help, it was a relief to finally to get a diagnosis.  However being told that our child had a life threatening liver disease was awful.”

There is currently no cure for the disease but Lucy takes daily medication in the form of steroids which aim to prevent the immune system from attacking itself.  However these do reduce her ability to fight any sort of infection.  Since beginning treatment Lucy has been progressing well although she has been admitted to hospital a couple of times when she developed chest infections. 

Dad Mark adds, “Lucy will require daily medication and monitoring for the rest of her life which is a lot to take on board and we are also aware that she could still require a liver transplant at some point in the future. We just take one day at a time and know that CLDF are there to offer support whatever the future may hold.”

Lucy is doing well since beginning treatment
(photo by North Devon Journal)

Lion Story

Parent Sharon McBride, whose daughter Hannah was diagnosed with liver disease, gave a talk at the 2007 CLDF annual conference about her experience.   During this presentation Sharon talked about her Lion story.  Sharon said; "When Hannah was a baby, I heard another parent describe living with liver disease as like 'waiting for the sleeping lion to roar'. The phrase really struck me and kept going round and round in my head. It seemed to sum up everything that I felt. So one day when Hannah was about 8 months old I wrote about living with our lion."  Sharons Lion story, which can be found below, moved many people:

Waiting for the sleeping lion to roar

The lion is always there. You can always see him, out of the corner of your eye. He is fast asleep. Others find it easy to forget he is there; after all, he is so quiet that you can barely hear him breathe. You can even forget him yourself sometimes. He becomes a background object, barely noticeable. But he is there.

Other times you suddenly stop and think ‘That’s a LION’ and it absolutely terrifies you. Even though he is asleep, he’s still a lion. He might wake up at any moment….and then what can we do? We cannot run, for he is our lion and we have to face him.

Sometimes, the lion may stir from his sleep. He twitches a muscle, or snores, or his eye opens just a crack. Your mouth is dry, your heart pounds – until long after he is peacefully sleeping again.

One day, the lion must surely wake. No one can know if he will wake slowly or quickly, or how loudly he will roar. When he does, we must summon all our strength to face him, for he is a formidable beast.

We can only hope that he stays asleep, for there is no way to make him go. He is part of our lives, and we have no choice but to face him with all the courage we can muster.