Meet Max. My third baby, second boy, and the most joyful baby I have ever come across.

Max was born in June 2022. He needed some treatment for jaundice but we soon went home and began our lives as a family of 5.

We attended a clinic when Max was 4 weeks old to check his jaundice levels. At this point Max was lovely and pink and we had no concerns so we're expecting all to be OK, but unfortunately this was just the beginning of a truly horrendous ongoing journey.

His bloods were abnormal. We were told it could be a virus, an infection, or something more severe called bilary atresia. We were admitted to hospital and began the start of many investigations to figure it out. It was at this point Max's poo went white... and the concern hit a different level.

We were sent to Leeds to see one of only four consultants specialising in children's liver disease. Max had a scan to check for bilary atresia and we were told they were 98% sure he did not have it. I naively thought that we had ruled out the worst case scenario but the consultant said unfortunately that was not the case. We had a discussion about the possibility of genetic conditions such as cystic fibrosis, alagilles, and alpha 1 antitrypsin deficiency, or metabolic conditions. Some manageable, some fatal and none of them curable. Some carried a life expectancy of 12 months. I left Leeds feeling heartbroken beyond anything I had ever felt in my life.

Max's bloods continued to worsen and we got admitted to Leeds as his liver was now failing. Max had a liver biopsy which showed inflammation of his liver and that there were not enough bile ducts. This all pointed to alagilles in which babies also have eye, spine and heart problems. Bloods were sent for genetic screening. He was commenced on a lot of medication to help absorb fats and vitamins.

Max had another 2 scans and again there was no evidence of bilary atresia but the results were abnormal as it showed his liver was not getting rid of the waste that it should. His spleen was now enlarged, and in light of his worsening bloods and still being jaundiced at 12 weeks old, in the words of his consultant he was "painting a bleak picture". Bloods were sent for metabolic conditions. At this point I remember sitting in the consultants office and I was inconsolable. I looked down at Max and instead of feeling the joy you should feel I felt panic, I felt pain and I prayed that if the worst was true please please don't let him suffer. I felt like i was dying inside.

Every morning I used to get my other babies to run to the window and open the curtains to check Max's colour. Then one morning when he was around 15 weeks old I thought he was a little less jaundice, then the next morning a little less, then the same the next morning. I didn't dare let myself dream. Then something wonderful happened... his bloods improved a little! Three weeks later his metabolic tests all came back as normal, his spleen started to reduce in size, and 6 weeks after that some of his bloods hit a NORMAL level!

While I write this his liver is still showing signs of damage and we do not yet have the results of his genetic tests but we are hopeful. We are lucky as not all parents get any hope. Children's liver diseases are not very well understood and they are incredibly rare. It seems we will never know what happened to Max. His consultant tells us that 40% of patient he sees are the same, but not all of these babies recover, 20% of them end up on the liver transplant list.

Having a baby with liver disease is very lonely because it is so rare. There are no forums, no social media groups, not many with shared experiences. At the worst points I was spending my whole days in bed, crying and researching constantly. I couldn't function, couldnt look after my other children, my husband couldn't go to work and leave me because I was frozen with fear and anxiety that my perfect little son was going to die.

By the time Max was 13 weeks old we had really only spent a total of 4 weeks at home. He was enduring sometimes twice weekly bloods, starving before scans (nothing harder than seeing your newborn screaming with hunger and not being able to feed them), and it felt that every day I received bad news. I was alone for most of this as my husband had to care for the other children. I didn't see them for sometimes 6 days in a row, not that I was really there when I was at home. They missed out on lots with me, with their new brother. I missed lots. My daughters nursery graduation, her induction to school and my sons first day at nursery. While none of these are a huge deal it was to me because I wondered how many other things was I going to miss? I didn't dare wonder what was Max going to miss. Sadly this is some parents reality.

So I am going to attempt the Great North Run and raise as much money as I can for children's liver disease research... For the babies like my Max, for the parents like us who never get any answers, and for the babies and families who never get any hope.