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Albie has just celebrated his 13th birthday, a day that 4 and a half years ago I wasn’t sure would come. Albie was a healthy, active, cheeky little 8 year old, he loved playing football, swimming, Lego and playing with his big brothers. Until 13th November 2021, when Albie came home and the first thing I noticed was the corners of his eyes were yellow. Having experienced prolonged newborn jaundice with my eldest son 16 years earlier, resulting in multiple tests to check for liver problems, I knew this was something to be worried about. I contacted the GP and had an urgent appointment, his urine was extremely dark, despite the fact he was drinking loads of water and he was very tired all the time. The doctor sent us straight to the local children’s ward at hospital, Albie had various tests, including blood and urine tests while we were there. He was finally discharged with suspected viral hepatitis and we needed to go back the following week for more blood tests.

During the following week, Albie deteriorated, he became more jaundiced, lethargic and couldn’t eat without being sick. I called the hospital several times during this time and was advised viral hepatitis can take over a week to recover from and to keep giving him calpol. When we returned to the hospital, he was so yellow, his ninja turtles onesie he was wearing only accentuated this. He looked so poorly. We spent the next week at the local hospital, having blood tests several times a day, they were in constant communication with Kings Hospital, London, the paediatric liver specialists. He was going to need a liver biopsy, as it appeared his symptoms were a bit of an anomaly, but had to wait for a bed to become available in London. In the meantime, he had IV antibiotics to try to control the infection, which later would discover he was allergic to.

Finally the day came for us to go to Kings Hospital, we had to travel by ambulance so Albie could be monitored for the journey. He was blue lighted all the way, eventually we arrived late that night.

Albie was very tired and disoriented the following the day, he was wired up to machines all the time and I just hoped for some magic medicine to make him better. Little did I know how the story would unfold. He declined rapidly, his blood results got worse every day and his ammonia levels were dangerously high. He had many many tests to see what was wrong with his liver, but no answers were found. After 5 days at Kings, I received the terrifying news that he was going to be listed for a liver transplant, he was in acute liver failure. Due to how poorly he was, he would be put to the top of the list in the country, he had a common blood group and was not too tiny, I was assured he would receive his transplant within 72 hours. He was to be put in an induced coma to prevent damage to his brain prior to the transplant. He couldn’t eat, his body was covered in a severe rash due to a penicillin allergy, he was slurring his words and drifted in and out of sleep. I was watching my baby slip away before my eyes.

Finally, he was taken into PICU to be put into a coma, at last I knew he was safe. I kissed him goodbye and told him he could sleep now. Whilst I was waiting to be allowed to see him again, I received the call I never could have imagined being excited to receive. A suitable liver had been found, all being well, he’d have his transplant the following day.

On 6th December 2021, Albie underwent a 6 hour operation to have his liver transplant. I had no idea at this point how badly his body had been damaged from the toxins from his failed liver or what life with a child with medical needs would look like. All I knew is, the surgeons at Kings Hospital had saved my boy’s life.

The weeks and months that followed were an up and down journey to recovery. The years that have followed have not always been easy, they’ve consisted of many hospital trips, tests, scans and a lot of medication. This last year has been particularly challenging, with a tonsillectomy, shingles and a lot of time off school. But Albie is incredible, he never complains, his life is so different to all his peers, but he doesn’t question why. Despite his low attendance, he’s still doing well at school, he plays football regularly and is still very active, despite not having the energy he used to have.

This year, we are travelling to Sheffield to attend our 4th British Transplant Games, where Albie will be part of the Kings children’s transplant team. He is participating in football, tennis and table tennis. We are all joining him in celebrating the donors by completing the 2.5km donor run, or 5km for some of us! It is such a valuable experience for him to meet up with friends from previous games and meet new ones, to be with other children who go through the same day to day issues as he does, who take the same medication and have lots of hospital trips. It’s amazing to witness the resilience of all the children taking part and see them excel in their sports despite what they’ve been through. It’s also great for parents and siblings to meet with other families who just get it. For that week, we are surrounded by families just like us, where a transplant is the norm!

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